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Annual Report2009-2010

352 Oxford Road, Junction off Denmark Road, Manchester, M13 9NLTel: (0161) 273 7200 (0161) 745 7671

Visit: www.cmmc.nhs.uk/nebata

T H E N O R T H O F E N G L A N D B O N E M A R R O W A N D T H A L A S S A E M I A

A S S O C I A T I O N R E G C H A R I T Y N O . 7 0 2 0 0 7

NEBATA THE NORTH OF ENGLAND

BONE MARROW AND THALASSAEMIA ASSOCIATION

Charity Reg. No:702007

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The North Of England Bone Marrow And Thalassaemia Association


NEBATA

Nebata Vice Chair person & Co- rdinatoro

Welcome to Nebata’s review of our activities and events from 2008 to 2010.As ever we are keen to keep our members, friends and well wishers up to date with Nebata’s work over the past two years.

As well as our regular annual conferences we have organised a variety of events for the thalassaemia community, with a particular focus on raising awareness and reaching new people.

helped create friendships and a valuable support network for people with thalassaemia, and their families

outreach programme.

We have attended large scale events, such as the Bradford Mela, and the Asian Lifestyle: Wedding and

in Fashion Exhibition in our continued effort to raise awareness of thalassaemia amongst Asian communities

the North West. We aim to encourage those looking to start a family to have a blood test, dispel myths and preconceptions about the condition, and to educate about thalassaemia and its treatment.

Nebata representatives have continued to attend conferences in Europe and beyond to keep the

thalassaeassociation continually up to date with the newest approaches and ideas in relation to the treatment of

I am thankful for the time given by volunteers for Nebata and those involved with patients and hope you enjoy reading about Nebata’s work.

With Peace and Best wishes,

Zanib RasulVice Chair/Co-ordinator

Mrs Zanib Rasul

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Nebata Vice Chair person & Co- rdinatoro

Welcome to Nebata’s review of our activities and events from 2008 to 2010.As ever we are keen to keep our members, friends and well wishers up to date with Nebata’s work over the past two years.

As well as our regular annual conferences we have organised a variety of events for the thalassaemia community, with a particular focus on raising awareness and reaching new people.

helped create friendships and a valuable support network for people with thalassaemia, and their families

outreach programme.

We have attended large scale events, such as the Bradford Mela, and the Asian Lifestyle: Wedding and

in Fashion Exhibition in our continued effort to raise awareness of thalassaemia amongst Asian communities

the North West. We aim to encourage those looking to start a family to have a blood test, dispel myths and preconceptions about the condition, and to educate about thalassaemia and its treatment.

Nebata representatives have continued to attend conferences in Europe and beyond to keep the

thalassaeassociation continually up to date with the newest approaches and ideas in relation to the treatment of

I am thankful for the time given by volunteers for Nebata and those involved with patients and hope you enjoy reading about Nebata’s work.

With Peace and Best wishes,

Zanib RasulVice Chair/Co-ordinator

Mrs Zanib Rasul

I was very honoured to be asked to serve NEBATA as its Chairman for a second term in late 2009.

I took over for the annual conference which took place in Levenshulme this year in a really excellent venue.

of younger patients and their siblings. The talks were very informative but more importantly the interaction between patient, families, carers and professionals was really excellent. I thoroughly enjoyed the whole day and from the looks of it so did everyone else. My thanks to Mrs Rasul and the organising committee. Well done!

BMT unit that I later went onto direct for over 13 years until 2005. Only last week Mrs Rasul was joined by Mrs Patel and Mrs Jassatt and many others running an information stall in the atrium of the new Royal Manchester Children’s Hospital as part of Thalassaemia awareness week. It was a real success with many passers

For the future we need to work hard to raise more money for the charity so we are able to widen our activities and get thalassaemia right to the top of the health service agenda. With the continued and very much appreciated involvement of Mr Peter Mount our president and Chairman of the Central Manchester Foundation Trust, the continuing effort of the committee and support of the North West Thalassaemia

unity as a whole, I am sure we can achieve this.Comm

Thank you all for your continuing support.

Andrew Will

Nebata ChairmanDr Andrew Will

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NEBATA

What is Nebata? ...............................................................................................................................................

Annual Conference- 18th October 2008 ...................................................................................................

Asian Lifestyle Fashion and Wedding Exhibition- 21st & 22nd February 2009 ..................................

Eid Party and Birthday Celebration-11th April 2009 ...............................................................................

8th May 2009 ...........................................................................................

VIP Campaign at Bradford Mela-14th June 2009 ......................................................................................

15th July 2009 ...................

11th International Conference on Thalassaemia & Haemoglobinopathies & 13th International TIF Conference for Thalassaemia Patients and Parents-8th to 11th October 2009 .............................................................................................................................

NEBATA Patient Outreach Project-

Noor TV Appearance ......................................................................................................................................

Asian Lifestyle Fashion and Wedding Exhibition- 20th & 21st February 2010 ...................................

2nd Pan European Conference on Haemoglobinopathies in Berlin- 13th & 14th March 2010 .....

20th April 2010 ..............................................................................................................

8th May 2010 ...........................................................................................

Useful Contacts ................................................................................................................................................

Contents

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What is Nebata? ...............................................................................................................................................

Annual Conference- 18th October 2008 ...................................................................................................

Asian Lifestyle Fashion and Wedding Exhibition- 21st & 22nd February 2009 ..................................

Eid Party and Birthday Celebration-11th April 2009 ...............................................................................

8th May 2009 ...........................................................................................

VIP Campaign at Bradford Mela-14th June 2009 ......................................................................................

15th July 2009 ...................

11th International Conference on Thalassaemia & Haemoglobinopathies & 13th International TIF Conference for Thalassaemia Patients and Parents-8th to 11th October 2009 .............................................................................................................................

NEBATA Patient Outreach Project-

Noor TV Appearance ......................................................................................................................................

Asian Lifestyle Fashion and Wedding Exhibition- 20th & 21st February 2010 ...................................

2nd Pan European Conference on Haemoglobinopathies in Berlin- 13th & 14th March 2010 .....

20th April 2010 ..............................................................................................................

8th May 2010 ...........................................................................................

Useful Contacts ................................................................................................................................................

Contents

5

7

10

11

11

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14

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Nebata is the North of England Bone Marrow and Thalassaemia Association. It provides

from support and information to sufferers of the genetic blood disorder, Thalassaemia. Operating

Manchester, Nebata provides support across the North of England, and even reaches as far as Cambridge, Bristol and Birmingham.

What is Nebata?

Areas covered by Nebata

History and Background of Nebata

Nebata was established in 1989 as a small local support group by parents of Thalassaemia sufferers and some care professionals under the name of the

mia Trust fund.Thalassae

and information of families affected by the disorder. By 1996 the group’s membership had grown to cover the whole of the North of England. Its name was accordingly changed to the North of England Bone Marrow and Thalassaemia Association, Nebata for short.

Aims

Our ongoing aims are to:o Help patients and families affected by Thalassaemiao Increase awareness of the disorder in the communities which are at high risk.o Make patients feel more comfortable with their treatment and daily routineo Help prevent isolationo patient demands includingo The best available treatmento Bone Marrow transplantationo New research and developmentso Provide care breaks in group such as the Patients’ Point of view Forum

Overview of Services

o We offer friendly advice from other patients an parents with experience of the disordero Community based support, including

meetings, writen information in four languages and

conferences and coffee mornings.o informationin a range of languages, and conferences and open days.o Awareness events to educate the general public, patients and their families. o Moral support for the family of newly

nosed babies.diago Financial aid for attendance at national and international conferences and workshopso Respite breaks – residential and day trips for patients and families.

Areas covered by Nebata

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NEBATA

Promoting Optimal Care

In keeping with the original objectives of the small support group almost 20 years ago, we aim to continue to encourage open communication between families affected by Thalassaemia and care professionals. Every year Nebata hosts a conference open to patients, their families, care professionals and the general public.

as well as occasional advisors on welfare rights for sufferers and their carers.

We are happy and proud to offer our conferences free of charge including many facilities, such as transport, crèche and lunch.

Child Protection Policy

In association with the PCT, NEBATA has a child protection policy, in order to ensure the security and

part welfare of children involved with the Association. It is committed to the highest standards possible and as

of this ethos encourages patients, carers and guardians to work together in partnership. This in turn leads to the provision of optimum support to our Thalassaemic patients, and allows us to take them on trips, assured of everyone’s safety.

Advice for new parents

Thalassaemia Centre, 352 Oxford Road, Manchester. Alternatively, house calls can be made.

Nebata works to provide support and advice to achieve our longstanding aim to

CARE UNTIL CURE

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Promoting Optimal Care

In keeping with the original objectives of the small support group almost 20 years ago, we aim to continue to encourage open communication between families affected by Thalassaemia and care professionals. Every year Nebata hosts a conference open to patients, their families, care professionals and the general public.

as well as occasional advisors on welfare rights for sufferers and their carers.

We are happy and proud to offer our conferences free of charge including many facilities, such as transport, crèche and lunch.

Child Protection Policy

In association with the PCT, NEBATA has a child protection policy, in order to ensure the security and

part welfare of children involved with the Association. It is committed to the highest standards possible and as

of this ethos encourages patients, carers and guardians to work together in partnership. This in turn leads to the provision of optimum support to our Thalassaemic patients, and allows us to take them on trips, assured of everyone’s safety.

Advice for new parents

Thalassaemia Centre, 352 Oxford Road, Manchester. Alternatively, house calls can be made.

Nebata works to provide support and advice to achieve our longstanding aim to

CARE UNTIL CURE

NEBATA’s annual conference was held on 18th October at the Nawaab International Restaurant.

haematologist at the Manchester

Rsul a thalassaemia patient. The chair welcomed all who attended and introduced the days proceedings. There then followed an update on NEBATA’s activities, given by the charities Vice President and Co-ordinator, Mrs Zanib Rasul.

of doctors and other health care professionals and its role to provide support for people affected by

date over 55 subjects have been covered in conferences organised by the charity.

stood down as chairman but Mrs Rasul explained he is still on the executive committee as a medical advisor.

The format of the conference consisted of a number of specialists giving talks on thalassaemia related

Will, a Consultant Paediatric Haematologist in which he discussed issues relating to venous access and the thalassaemia patient.

-match and the safety policies and methods used to minimise risks.

Nebata’s Annual Conference18th October 2008NEBATA’s annual conference was held on 18th October at the Nawaab International Restaurant. Chairing the meeting were Dr Kate Ryan, a consultant haematologist at the Manchester Royal Infi rmary and Mr Yameen Rsul a thalassaemia patient. The chair welcomed all who attended and introduced the days proceedings. There then followed an update on NEBATA’s activities, given by the charities Vice President and Co-ordinator, Mrs Zanib Rasul.

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NEBATA

method used for routine monitoring of thalassaemia patients using magnetic resonance imaging)as it is now

relationship. These talks give patients and families the chance to participate in indepth discussion of developments and issues relating to Thalassaemia given by experts, which gives them a greater awareness and understanding of Thalassaemia, and helps to show work being done and new developments being made in the treatment of the condition. A Word from the Chairman

In the speech Mr Mount discussed the completion of the new Royal Manchester Children's Hospital, the

ning of construction of a patient and carer hotel with 60 en suite apartments which will offer free, unlimited accommodation to families whose children are in hospital for long periods of time. He explained Manchester'importance as a major centre of research in many areas, with hopes that continuing learning about the

s

as thalassaemia.

Mr Mount highlighted the importance of support groups like Nebata because of the help they give to people who are very frightened and worried about their condition and by providing a means for people to be able to share experiences and gain strength from each other. He described how Nebata also provides a forum for medical professionals to see the hospital services through the eyes of patients and carers, and so help the hospital respond more effectively to patients needs. In Mr Mounts words “Never be afraid to tell us if you think we can make it better. The chances are you will see things which we don’t see. I meet Mrs Rasul very regularly and will always help where I can.”

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method used for routine monitoring of thalassaemia patients using magnetic resonance imaging)as it is now

relationship. These talks give patients and families the chance to participate in indepth discussion of developments and issues relating to Thalassaemia given by experts, which gives them a greater awareness and understanding of Thalassaemia, and helps to show work being done and new developments being made in the treatment of the condition. A Word from the Chairman

In the speech Mr Mount discussed the completion of the new Royal Manchester Children's Hospital, the

ning of construction of a patient and carer hotel with 60 en suite apartments which will offer free, unlimited accommodation to families whose children are in hospital for long periods of time. He explained Manchester'importance as a major centre of research in many areas, with hopes that continuing learning about the

s

as thalassaemia.

Mr Mount highlighted the importance of support groups like Nebata because of the help they give to people who are very frightened and worried about their condition and by providing a means for people to be able to share experiences and gain strength from each other. He described how Nebata also provides a forum for medical professionals to see the hospital services through the eyes of patients and carers, and so help the hospital respond more effectively to patients needs. In Mr Mounts words “Never be afraid to tell us if you think we can make it better. The chances are you will see things which we don’t see. I meet Mrs Rasul very regularly and will always help where I can.”

A series of workshops followed, where attendees of the conference where put into groups and asked to discus common issues and concerns they have about living with thalassaemia. The groups were divided into adult male patients, adult female patients, parents, and young people with the condition.

Adult Male Patients:

· Issues with adult services- patients felt that support tails off, and thought that referral to endocrine specialists could help this.

· Lack of explanations relating to test results and the need for an individual approach to patient care.

· Need for increased education in relation to whether people with thalassaemia can have children and if so how to approach this. Advice from other patients who have had children would be useful in this area.

Parents:

also side effects can mean chelation has to be stopped.

tablet which aids the removal of excess iron from the body)· More education on how to recognise delayed puberty and growth.· Concerns about the availability of safe transfusions in other countries to allow

patients to travel abroad.· Lack of transitional care from childhood to adult.

Females:· After blood transfusions patients feel low, tired, weak, and have aches and pains.· Fertility issues, PMT, and not feeling able to talk to professionals about intimate

issues

Young Patients:

appointments and transfusions.· The Hospital environment is good for small children, but boring for older ones· Having thalassaemia makes young people feel that they are missing out as can

often feel tired and they would like their friends to know more about the condition.

All the groups agreed that conferences are useful for support and knowing what other people are going through.

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NEBATA

The Asian wedding fair took place at the G-Mex centre over the weekend of 21st and 22nd February 2009. The fair offers inspiration for businesses and services for a modern Asian wedding. It was an ideal

tested to see opportunity for Nebata to raise awareness about thalassaemia and to encourage young people to get

whether they are carriers and at risk of having children with thalassaemia. Nebata had a stall both days of the fair, it was manned by volunteers on a rota basis. The stall was very popular and attracted interest from a range of age groups. The atmosphere was extremely lively with plenty

which was drawn on 10th May.The message Particular emphasis was placed on the need for pre-conception testing among couples to determine whether they are healthy carriers of thalassaemia as well as how to arrange for early testing in pregnancy if both parents are found to be carriers. Awareness

individuals had no knowledge about thalassaemia, whereas others were more aware of options available to them. The majority of peoplehowever were unaware that they could approach their GP for testing as well as self refer to the

Nebata’s participation in the event was very

as thalssaemia

amongst young people as well getting families to discuss thalassaemia and what it means for them and their families.

Asian Lifestyle Wedding & Fashion Exhibition21st & 22nd February 2009

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The Asian wedding fair took place at the G-Mex centre over the weekend of 21st and 22nd February 2009. The fair offers inspiration for businesses and services for a modern Asian wedding. It was an ideal

tested to see opportunity for Nebata to raise awareness about thalassaemia and to encourage young people to get

whether they are carriers and at risk of having children with thalassaemia. Nebata had a stall both days of the fair, it was manned by volunteers on a rota basis. The stall was very popular and attracted interest from a range of age groups. The atmosphere was extremely lively with plenty

which was drawn on 10th May.The message Particular emphasis was placed on the need for pre-conception testing among couples to determine whether they are healthy carriers of thalassaemia as well as how to arrange for early testing in pregnancy if both parents are found to be carriers. Awareness

individuals had no knowledge about thalassaemia, whereas others were more aware of options available to them. The majority of peoplehowever were unaware that they could approach their GP for testing as well as self refer to the

Nebata’s participation in the event was very

as thalssaemia

amongst young people as well getting families to discuss thalassaemia and what it means for them and their families.

Asian Lifestyle Wedding & Fashion Exhibition21st & 22nd February 2009

On 11th April 2009 a party of sixty patients and their families joined together to celebrate Eid and the fortieth birthday of

enable patients to speak to each other relaxed atmosphere to

about issues affecting their life with Thalassaemia. After lunch Tanver gave a speech about the success and dif-

patients and Thalassaemia Major. It was inspiring for the younger

their parents as it showed that there is always hope for a

Rasul presented a

Zanib Rasul. They raised the money by running

10 mile Run in Portsmouthin October 2009. All the funds raised will go towards Nebata’s campaign to raise awareness and other educational purposes.

Eid party and Birthday Celebration11th April 2009

Tanver giving is speech

To mark International Thalassaemia day, Nebata took on TIF,

assaemia International Federation’s Thal

slogan for International Thalassae

In the spirit of the slogan Nebata set up a stall outside the charity’s

assaemia Centre, and opposite Thala main commuter route and the

volunteers, thalassaemic patients and their family members manned the

Thalassaemia and what the support Nebata offers.

distribute information to a wide demographic of people.

patient we hope the indiscriminate sharing of information will lead to the eventual trickling of knowledge of Thalassaemia to those who would otherwise be unaware.

To mark the end of a hard day’s campaigning colourful balloons

logo were released, and a lunch at a Manchester restaurant was provided to the volunteers as a show of gratitude of their hard work and support.

International Thalassaemia Day9th May 2009

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NEBATA

of a family friendly mix of food, stage entertainment, consists street

theatre, market stalls, children’s activities, funfair rides and community information.Bradford Mela is

from outside the district in 2008. The National Blood service has mounted a “V.I.P. Appeal” to promote blood donation in ethnic minorities, and the Mela was used as a forum to publicise this as the 14th June

- bata, attended as an ambassador and worked with the campaigners to promote awareness and registration for

mia Major, a life-threatening blood disorder and every has to have blood transfusions three weeks. Thanks to these

to the Asian community’s sense of supporting and helping

Bradford Mela14th June 2009

one another, as each blood donation is saving a life.'

What Is the VIP Appeal?

and south Asian community to become Very Important People by donating blood.

sions and are more prevalent in both communities.transfu

amongst Asian people.

The event was a great success, in total approximately 200 completed blood donation

importance of blood donation within the Asian community.

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of a family friendly mix of food, stage entertainment, consists street

theatre, market stalls, children’s activities, funfair rides and community information.Bradford Mela is

from outside the district in 2008. The National Blood service has mounted a “V.I.P. Appeal” to promote blood donation in ethnic minorities, and the Mela was used as a forum to publicise this as the 14th June

- bata, attended as an ambassador and worked with the campaigners to promote awareness and registration for

mia Major, a life-threatening blood disorder and every has to have blood transfusions three weeks. Thanks to these

to the Asian community’s sense of supporting and helping

Bradford Mela14th June 2009

one another, as each blood donation is saving a life.'

What Is the VIP Appeal?

and south Asian community to become Very Important People by donating blood.

sions and are more prevalent in both communities.transfu

amongst Asian people.

The event was a great success, in total approximately 200 completed blood donation

importance of blood donation within the Asian community.

All Party Parliamentary Group on Sickle Cell & Thalassaemia Launch14th July 2009

NEBATA was invited to attend

14th July at the House of

attended on Nebata’s behalf to show support for the group

2008.

APPG was set up to raise

parliaawarness of both conditions in

- ment, to help policymakers and professionals recognise the current standard of care for patients. The group has concerns that these standards are variable depending on where a patient lives within the country. The work of the APPG involves interactwith the sickle cell and

ing

to thalassaemia community in order

highlight topics of importance that can then be reported back to Parliament and form the basis of future action.

The All Party Parliamentary -

anne Abbott MP. It was set up in October 2008 to raise awareness of the conditions in Parliament. group of committed profession

discussed removing prescriptioncharges for with patients, clinicians and the Royal College of Physicians, and the social and educational impact of sickle cell and thalassaemia in a meeting with social workers, academic researchers, patients and

The groups mission statement states that it “exists to reduce the health inequalities that are faced by sickle cell and thalassaemia patients in the UK, by improving standards of care and by addressing other critical issues, as recommended by the key stakeholders. Members will achieve this aim by engaging with Parliamen

tary colleagues, the

Government, health professionals, and community and patient groups to raise

awareness relating to the conditions and the needs of patients.”

From the APPG’s work so far it

have made a genuine commitment to raise standards of care, and services are improving. But there is still much more that needs to be done to improve the situation for service users.

This means implementing the

clinical networks and educating health professionals to better understand the conditions. The ultimate goal of the APPG is to ensure service users are receiving

and we will continue to work with stakeholders to achieve this.

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NEBATA

11th International Conference on Thalassaemia & Haemoglobinopathies & 13th International TIF Conference for Thalassaemia Patients and Parents8th to 11th October 2009

The combined 11th International Conference on Thalassaemia and Other Haemoglobinopathies, and 13th International TIF Conference for Thalassaemia Patients

from 8th to 11th October, organ-

Among the delegates were 600 patients and parents attended, along with 400 medical doctors, nurses and other health profes-sionals.

- ence was held in an Asian country, where there are still prejudices surrounding people with thaholding

lassaemia. It is hoped that large scale events such as

these with prominent members of the medical community attending will help dispel myths and help make people with thalassaemia feel more supported, by showing thalassaemia is recognised as an important health concern in Asia.

Nebata members attended the event and took patients from the

continued over four days, with six lectures for all attendees and 16 symposia covering themes from epidemiology and prevention to management of complications and alternative therapies. The scien

with the patients’ and parents’

programme, which provided an update on holistic treatment and enabled the exchange of personal experiences in interactive sessions, while giving participants the opportunity to meet others from all over the world.

The opening address was given by ety,

and discussed thalassaemia and the government support for

tional Thalassaemia Registry. The registry was set up in 1992 by Professor Ivy Ng to screen family members of thalassaemia carriers, and to provide counselling for those who carry the genes.

The speaker explained that during the conference experts will share

treatment options such as stem cell therapy and gene therapy which will bring new hope to the many sufferers of thalassaemia in

The presentation highlighted the importance of conferences like this one, describing how such meetings allow the best minds

brainstorm, discuss and share

discussing thalassaemia as a global health problem. Other plenary lectures were given across the

Borgina-Pignatti, Professor Guido Lucarelli, Professor Antonio Piga,

The topics covered included new insights into iron chelation and a discussion on fertility and pregnancy in thalassaemia major.

There was also a series of symposiums covering subjects such

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as epidemiology, blood donation, infections, liver disease and cardiac complications in thalassaemia and also psycho-social care of those with thalassaemia.

Overall the conference provided an excellent and accessible overview of the issues surrounding thalassaemia, and the developmentsrelating to treatment of the condition. Nebata’s attendance at such conferences enables us

developments surrounding the treament of thalassaemia, and to meet members of the worldwide

pore) was formed by a group of parents and volunteers to meet the following objectives:a. create public awareness and disseminate relevant and the latest medical information relating to Thalassaemia.b. provide community support and social interaction among Thalassaemia patients and their families.

families and referral of social and welfare services.

thalassaemia community, to hear their stories and concerns, to help Nebata have a deeper understandingof issues faced by those with the condition, and their families and friends.

organisation involving 98 national thalassaemia associations and other members from over 60 countries across the world.organisation involving 98 national thalassaemia associations and other members from over 60 countries across the world.

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NEBATA

Asian Lifestyle Wedding & Fashion Exhibition20th & 21st February 2010

Following the success of last years presence at the Asian Lifestyle Wedding & Fashion Exhibition Nebata had a stand at the exhibition this year.

This event proves a great way of meeting people form the Asian community to raise awareness of thalassaemia. As with 2009 the knowledge of thalassaemia was varied, although most people were unaware of the condition or had been misinformed about it.

The people who knew the most were those with the condition or who knew people with thalassaemia, but still they had not heard of Nebata and we were able to explain our support and advice services to them. Unfortunately the turnout for this years show was lower than last year, perhaps due to the current economic situation, but the event was still busy enough to enable us to speak to many people over the two days.

The stand was manned by Nebata volunteers, and displayed a selection of literature

As part of its continuing aim to raise awareness of thalassaemia. Nebata took part in a television campaign on Noor TV, an Asian television station broadcast-

Noor Tv Appearance

This project involves approaching thalassaemia patients and their families in clinics at the Central Manchester Children’s Hospital.

ber 2009 and have already met new patients and families who were previously unaware of NEBATA. Interacting with thalassaemia patients in this manner has proved a successful way of being able to have one to one discussions as well as raising awareness amongst other visitors to the hospital. We are planning on expanding the project in the new yet to include a stall in the main reception of the Royal Manchester Children’s Hospital, to continue raising awareness of Nebata, but also of the condition thalassaemia amongst hospital visitors.

Nebata Patient Outreach Project

ing throughout Europe, Africa, The Middle East and many parts of Asia. Nebata’s Vice Chairperson, Mrs. Zanib Rasul was interviewed by Noreen Akthar and answered a vari-

two of her own children have been affected by the condi-tion, which motivated her to start the charity in 1989, and explained what thalassaemia is and how long the con-dition has been known about. Mrs Rasul also highlighted the importance of blood donation and the current need for donors,.The interview was broadcast four times on

on the back of the campaign.

December 2009 to Present

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Asian Lifestyle Wedding & Fashion Exhibition20th & 21st February 2010

Following the success of last years presence at the Asian Lifestyle Wedding & Fashion Exhibition Nebata had a stand at the exhibition this year.

This event proves a great way of meeting people form the Asian community to raise awareness of thalassaemia. As with 2009 the knowledge of thalassaemia was varied, although most people were unaware of the condition or had been misinformed about it.

The people who knew the most were those with the condition or who knew people with thalassaemia, but still they had not heard of Nebata and we were able to explain our support and advice services to them. Unfortunately the turnout for this years show was lower than last year, perhaps due to the current economic situation, but the event was still busy enough to enable us to speak to many people over the two days.

The stand was manned by Nebata volunteers, and displayed a selection of literature

As part of its continuing aim to raise awareness of thalassaemia. Nebata took part in a television campaign on Noor TV, an Asian television station broadcast-

Noor Tv Appearance

This project involves approaching thalassaemia patients and their families in clinics at the Central Manchester Children’s Hospital.

ber 2009 and have already met new patients and families who were previously unaware of NEBATA. Interacting with thalassaemia patients in this manner has proved a successful way of being able to have one to one discussions as well as raising awareness amongst other visitors to the hospital. We are planning on expanding the project in the new yet to include a stall in the main reception of the Royal Manchester Children’s Hospital, to continue raising awareness of Nebata, but also of the condition thalassaemia amongst hospital visitors.

Nebata Patient Outreach Project

ing throughout Europe, Africa, The Middle East and many parts of Asia. Nebata’s Vice Chairperson, Mrs. Zanib Rasul was interviewed by Noreen Akthar and answered a vari-

two of her own children have been affected by the condi-tion, which motivated her to start the charity in 1989, and explained what thalassaemia is and how long the con-dition has been known about. Mrs Rasul also highlighted the importance of blood donation and the current need for donors,.The interview was broadcast four times on

on the back of the campaign.

December 2009 to Present

We also used the event as a fundraising opportunity, by continuing to sell cards, the outcome of a previous project where an artist worked with thalassaemia patients to make designs, and also

Attending this event shows us both the lack of understanding about thalassaemia, and also the

not know about the condition, not wanting to be scared or worried, whereas others are much more eager to know more and understand. This really highlights the importance of Nebata’s work to raise awareness of thalassaemia, seeing the lack of awareness contrasted with the knowledge that thalassaemia is highly prevelant amongst the Asian population, and many people at the event could be carriers without even realising.

Volunteers man the Nebata stand:

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NEBATA

2nd Pan European Conference on Haemoglobinopathies in Berlin13th to 14th March 2010

The conference in Berlin was attended by members of Nebata, including the charities vice-chair Mrs Zanib Rasul, who was on the organising committee for the

Rasul. They were accompanied by

Leeds, as Nebata feels it is im-portant to provide patients with the opportunity to attend confer-ences such as these, as they are both educational and provide the opportunity for patients to meet others affected by thalassaemia from different parts of the world.

-ence was held in Europe, an area where few are aware of haemoglobin disorders, even though they are the most common genetic disorders in the world. Although these genes tend to be rare around Europe, migration has meant that the prevalence is steadily increasing. This was also

for a mixed audience, to enable participant to share views and experiences and to learn from each other. The organisers wished to encourage patient delegates to

create and event which was inspi- rational as well as informative.The event was carried out over three days and consisted of a series of lectures given by medical professionals and attracted several hundred patients, doc-

tors and other participants from across Europe. Mrs Rasul and

ference meeting on 12th March, which consisted of a meeting of the Expert Patient Programme to discuss the programmes vision and methodology.The conference’s opening

Androulla ceremony was chaired by

Eleftheriou, Execitive director of TIF and Prof. Gerhard Gaedicke head of the department of messages

Paedriatics, with welcome

of TIF, Prof. Gerhard Gaedicke,

of the Berlin Medical Council. There followed a series of four plenary sessions over the two day conference, which consisted of a number of presentations relating to the subjects of haemoglobin-opathies screening, the clinical management of both thalassaemia and sickle cell disease and new

treatment of both conditions. ment

was the developments in stem cell therapy and cord blood transplantation discussed by Emanuele Angelucci,

There was a programme of work

active discussion on 13th March addressing patients concerns

George Constantinou, treasurer

and board member of TIF.

19

2nd Pan European Conference on Haemoglobinopathies in Berlin13th to 14th March 2010

The conference in Berlin was attended by members of Nebata, including the charities vice-chair Mrs Zanib Rasul, who was on the organising committee for the

Rasul. They were accompanied by

Leeds, as Nebata feels it is im-portant to provide patients with the opportunity to attend confer-ences such as these, as they are both educational and provide the opportunity for patients to meet others affected by thalassaemia from different parts of the world.

-ence was held in Europe, an area where few are aware of haemoglobin disorders, even though they are the most common genetic disorders in the world. Although these genes tend to be rare around Europe, migration has meant that the prevalence is steadily increasing. This was also

for a mixed audience, to enable participant to share views and experiences and to learn from each other. The organisers wished to encourage patient delegates to

create and event which was inspi- rational as well as informative.The event was carried out over three days and consisted of a series of lectures given by medical professionals and attracted several hundred patients, doc-

tors and other participants from across Europe. Mrs Rasul and

ference meeting on 12th March, which consisted of a meeting of the Expert Patient Programme to discuss the programmes vision and methodology.The conference’s opening

Androulla ceremony was chaired by

Eleftheriou, Execitive director of TIF and Prof. Gerhard Gaedicke head of the department of messages

Paedriatics, with welcome

of TIF, Prof. Gerhard Gaedicke,

of the Berlin Medical Council. There followed a series of four plenary sessions over the two day conference, which consisted of a number of presentations relating to the subjects of haemoglobin-opathies screening, the clinical management of both thalassaemia and sickle cell disease and new

treatment of both conditions. ment

was the developments in stem cell therapy and cord blood transplantation discussed by Emanuele Angelucci,

There was a programme of work

active discussion on 13th March addressing patients concerns

George Constantinou, treasurer

and board member of TIF.

Nebata Open Day20th April 2010Following the success of Nebata’s patient outreach

Fashion and Wedding Exhibition’ in February, we were keen to host an open day for the new people who showed an interest in our organisation.

The open day provided the opportunity for people to learn more about thalassaemia and its treatment, with

of literature available provided by Nebata, as well as

The event was also aimed to give visitors an opportunity to meet other thalassaemia patients and their families, in an informal and relaxed setting, where attendees could compare stories and discuss issues relating to the condition.

Nebata provided food and activities for the children

was held, was full of people and chatter by the afternoon. People at the event had the opportunity to sign their children up to participate in a day trip Nebata

are planning to put on in the summer, for young thalassaemia patients to visit a theme park in the North West.

hugely successful, providing a thorough yet accessible insight into thalassaemia and bone marrow transplants. He explained the use of bone marrow transplants in a variety of conditions, and discussed the main priorities for a successful transplant when treating thalassaemia being the health and age of the patient, and the donor being a sibling or parent to provide the closest match.

answer session, giving the opportunity for attend

thalassaemia.

The open day overall was a great success, we hope that people left the event with a greater understanding of thalassaemia, and also having made new friendships.

Attendees enjoying the day.

Nebatas information stand at the event



NEBATA

To mark this years International Thalassaemia Day on 8th May 2010, Nebata set up an awareness stand in the entrance foyer of the Manchester Children’s Hospital. The stall was manned by a variety of volunteers, including families with thalassaemia who are in-volved in the charities work. Nebata chose to promote the Thalassaemia International Federation’s theme for Interna-tional Thalassaemia Day 2010 of “THE INFORMED PATIENT: KNOWLEDGE IS POWER” and made the focus of the day to educate and inform members of the public and patients pass-ing through the hospital about the condition, and direct them to

information.

Overall the day was a success, with the stall attracting interest and volunteers handing out leaf-lets and talking to passers-by. The charities patron Dr Andrew Will attended to show his support.

International Thalassaemia Day8th May 2010

teers

Thalassaemia International FederationTel:www.thalassaemia.org.cy

Anthony Nolan TrustTel: 0303 303 0303www.anthonynolan.org.uk

Manchester Sickle Cell & Thalassaemia CentreTel: 0161 274 3322www.mcr-sicklecellandthalassaemia.co.uk

Useful Contacts:

Nebata:Tel: 0161 273 7200

Uk Thalassaemia SocietyTel: 0208 882 0011www.ukts.org

[email protected]

To mark this years InternationalThalassaemia Day on 8th May2010, Nebata set up an awarenessstand in the entrance foyer of theManchester Children’s Hospital.The stall was manned by a varietyof volunteers, including familieswith thalassaemia who are involvedin the charities work.Nebata chose to promote theThalassaemia InternationalFederation’s theme for InternationalThalassaemia Day 2010 of“THE INFORMED PATIENT:KNOWLEDGE IS POWER”and made the focus of the dayto educate and inform membersof the public and patients passingthrough the hospital aboutthe condition, and direct them toplaces where they can fi nd moreinformation.

Overall the day was a success,with the stall attracting interestand volunteers handing out leafl etsand talking to passers-by. Thecharities patron Dr Andrew Willattended to show his support.

annual report 2010 v2 - nebata-uk.co.uk › ... › 2010-nebata-annual-report.pdf · 3 nebata vice...

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