Work Package 7

Information for patients with rare cancers

WP leader: Francesco De Lorenzo

Information network on rare cancers

Summary: ECPC: "Nothing about us without us"

• Representing > 345 cancer patient groups in 42 countries

• All cancers – common and rare• Run and governed by patients

• Promoting timely access to appropriate prevention, screening, early diagnosis, treatment and care for all cancer patients

• Reducing disparity and inequity across the EU

• Encouraging the advance of cancer research & innovation • Increasing cancer patients' influence

over European health and research policy• High visibility with EU Commission, EMA,

EU Parliament (FACE – 100 European Politicians)

Information network on rare cancers

ECPC Advocacy :bridging diversity to support cancer

survivors

European level National level

Coordination & Advocacy

Information network on rare cancers

Work Package 7

Objective:– To identify centres of expertise for rare cancers– To develop and disseminate information for patients

including patients’ associations dedicated to rare cancers

Deliverables:– Development of an informative toolkit to inform

patients on rare cancers– Creation of a list of centres of expertise for rare

cancers to which patients should be referred to

Information network on rare cancers

How? Using ECPC member organisations - to get feedback and

disseminate the information to rare cancer patients. Using key patient advocates to give feedback on the information

material developed. Capacity Building for member organisation to use this information Identify key tool for patients Dissemination of this information to different forums including policy

forums

Together with partners, collaborators, clinicians, patients, scientific societies, health authorities

Information network on rare cancers

Partners WP7

• Associated partner:

Partners involved: ECPC, INT (epidemiology unit), ISS, CCC, UE, INT (oncology unit).

• Collaborating partners:

– EAARC, EPAAC, ESSO, ESO, INSERM, Centre of Leon Berard, ESMO, LeukaNet, ECCO

Information network on rare cancers

Milestones

Analyse the patient information status quo before developing the informative toolkit and discuss with the project

Establish a patient network for rare cancer patients building on the already existing networks

Develop together with the partners a questionnaire and conduct the survey meant to identify the clinical centres of expertise

Publish a list of patients associations dedicated to rare cancers (additional organisations will be added throughout the duration of the project)

Prepare 6 reports on the results of the workshops to train patients and discuss the results of the survey to identify canters of expertise

Information network on rare cancers

Information network on rare cancers

Organization Country

1Bulgarian Academy of Management of Pain, access to oppioids and palliative care Esperanza Bulgaria

2 Diagnoza CML Czech Republic3 Lyle Patientforening for Lymfekraeft og Leukaemi Denmark4 Anvolt (National Association Voluntary Against Cancer) Italy5 Italia Glioblastoma Multiforme Italy6 Gruppo AIL Pazienti LMC * Italy7 OHLB, 'Kraujas' Lithuania8 Lithuania Rare cancer patients advocacy group Lithuania9 Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland

10 Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland11 Nationwide Association of the CML Patients Aid Poland12 Polish Cancer Patient Coalition* Poland13 Nationwide Association of CML Patients Aid* Poland14 Myeloma Euronet Romania Romania15 Asociatia Little People Romania Romania16 Romanian Association against Leukemia* Romania17 Romanian Rare Cancers Association* Romania18 Association Ilco-Stoma RS BL* Serbia19 Gynsam, The Gynaecological Cancer Patients National Coalition* Sweden20 Paws-Gist UK21 Gist Support UK UK22 Lymphoma Association UK23 brainstrust: the Meg Jones Brain Cancer Charity UK24 International Brain Tumour Alliance (IBTA) UK25 Kidney Cancer Association USA

*Associations that haven't answered yet to the questionnaire

Patient Organisations

attended Masterclass

______________ECPC will

identify one lead patient advocate

per Member State to

coordinate and liaise with ECPC

Secretariat

Information network on rare cancers

Associations to be contacted Organization Country

1Patient Group for lymph and leukemia cancer patients Denmark

2German Leukaemia and Lymphoma Aid / Deutsche Leukaemie- und Lymphom-Hilfe Germany

3 Leukaemie-Online e.V. Germany

4

Contactgroep Myeloom and Waldenström Patienten (CMWP)/MM&WM Patient Association Netherland

5Carita Foundation - Life with Multiple Myeloma Poland

6 Stowarzyszenie Pomocy Chorym Na Gist Poland

7 Spanish Association of Lymphoma Sufferers Spain

8 Swedish Brain Tumor Association Sweden

9 CML Support Group UK Uk

10Brainstrust: The Meg Jones Brain Cancer Charity Uk

Information network on rare cancers

Survey Conducted with Patient Organisations to identify main activitues

Information network on rare cancers

Unmet Health Needs of rare cancer patients

Information network on rare cancers

Organization Country

document/leaflet/inf

ormation materials

available?

Description Format wished by members

Myeloma Euronet Romania RomaniaYes

Simplified info brochure - romanian language - paper and electronic format paper

Paws-Gist UK Yes English, linked to american clinic paper and electronicAnvolt (National Association Voluntary Against Cancer) Italy

/ / /

Gist Support UK UKYes

"Eating after gastectomy"; "What is GIST"; website paper and online

Italia Glioblastoma Multiforme Italy No / /

OHLB, 'Kraujas' LithuaniaYes

In the web-site: guide books on treatments, informational leaflets, educational slide-shows, only lithuanian language paper and electronic

Diagnoza CML Czech RepublicYes

Informative material in czech language. Paper, electronic and dvd format paper, website, dvd format

Asociatia Little People Romania RomaniaYes

2 publications: guide for parents; guide for psychosocial care providers; + An information website electronic

Lyle Patientforening for Lymfekraeft og Leukaemi Denmark

No /Internet, brochure from medical professional

Lymphoma Association UK

Yes11 english booklets and 70 information sheets covering all aspects of lymphoma. All our information and materials are available on our website and can be downloaded. paper and electronic

Document/Leaflet/information Materials Available

Information network on rare cancers

Document/Leaflet/information Materials Available

Kidney Cancer Association USAYes

“We Have Kidney Cancer,” available in 11 languages. in print, for the Kindle, and in PDF format Internet

brainstrust: the Meg Jones Brain Cancer Charity UK

Yes

In English – web based support materials and information with Dept of Health accreditation, practical tools such as our brainbox, and other books.

/

Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland

Yes

Leaflet: “Diagnoza GIST? To nie jest koniec świata” (Are you diagnozed with GIST? It is not the end of the world). IInstruction how to cooperate with Clinical GIST Register. Paper format, in Polish. Basic information for the new diagnosed GIST patients. Paper

Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland

Yes

Web site + EWMnetwork’s flyer is only available on paper in English language and describes the aims of the network. The flyer is meant as handout on workshops and congresses. Electronic

International Brain Tumour Alliance (IBTA) UK

Yes

The IBTA is a founding member of Cancer 52, the alliance of rare cancer organisations in the UK. As such our members (over 50 of them) have various types of support material available both in printed format and electronic format.

/

Nationwide Association of the CML Patients Aid Poland

Yes

A lot of information we present on the website of our Association and during the patients meeting we give them some materials

/

Lithuania Rare cancer patients advocacy group Lithuania

Yes

have a book about GIST tumors in patients with Lithuanian language, printed version. created a documentary film about our patients, we aim to reducing its social exclusion

/

Bulgarian Academy of Management of Pain, access to opioids and palliative care Esperanza Bulgaria

/ / /

Information network on rare cancers

Are you in contact with researchers association or medical professional associations for information?

Organization Countrycontact with

researchers/medicals association

Myeloma Euronet Romania Romania YesPaws-Gist UK Yes

Anvolt (National Association Voluntary Against Cancer) Italy

Yes

Gist Support UK UK YesItalia Glioblastoma MultiformeItaly Yes

OHLB, 'Kraujas' LithuaniaYes, at european level (EORTC, ESMO, EHA)

Diagnoza CML Czech Republic Yes

Asociatia Little People RomaniaRomania

Yes, Universities, National Society of paediatric Oncologists&Haematologists of Romania

Lyle Patientforening for Lymfekraeft og Leukaemi Denmark

Yes

Lymphoma Association UK

Yes. All publications either written or reviewed by medical experts. Medical Advisory Panel of 30 distinguished consultant haematologists and haemato-oncologists.

Information network on rare cancers

Kidney Cancer Association USA

Yes, We sponsor four international medical symposia

brainstrust: the Meg Jones Brain Cancer Charity UK

Yes

Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland

Yes, Clinical GIST Register

Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland

Yes, Medical Advisory Board with WM specialists from different European countries

International Brain Tumour Alliance (IBTA) UK

Yes

Nationwide Association of the CML Patients Aid Poland

Yes

Lithuania Rare cancer patients advocacy group Lithuania

Not enough

Bulgarian Academy of Management of Pain, access to opioids and palliative care Esperanza Bulgaria

Yes, Association of Innovative MedicineMedical University SofiaMedical University VarnaMedical University Pleven

Are you in contact with researchers association or medical professional associations for information?

Information network on rare cancers

M1: Analyse the patient information status quo before developing the informative toolkit and discuss with the project

Actions: Questions:

– Use existing information– Developing new material– Type of Languages that will be used – Getting feedback from patient organisations regarding the format of

the information that they would like to receive. Contacting our member organisations and asked partners the type

of information that they have Getting feedback from the partners in the Project

Information network on rare cancers

M2: Establish a patient network for rare cancer patients building on the already existing networks

Actions: Key Rare Cancer Advocates identified at the national level among ECPC

membership Existing Rare Cancer Action Group that will be expanded and developed to

cover: a) different rare cancers and b) different regions Asking Rare Cancer Advocates to recruit new patient advocates so as to

have a multiplier effect Expanding the database of patient advocates that would attend which would

be available to partners.

Information network on rare cancers

M3: Questionnaire and conduct the survey meant to identify the clinical centres of expertise

Questionnaire will be based on the criteria developed from WP5

Question will be about Criteria about CoE Good Response Rate - 80% In case of low response rate:

– Organize Focus Group Meetings– Phone Interviews

Information network on rare cancers

M4: Workshops

With Information Toolkit: Provide training workshops and encourage participants to use the toolkit with their members.

Ensure a high regional participation at these workshops.– To discuss Criteria of Committee of Expertise - Work Closely with

WP5 – To develop networks between patients and the partners of the

Project. – To learn and share between patient organisations from different

Member States and provide oppurtunity for partners in project to engage

– To discuss the transferability of these criteria between different Member States and within the regions

Information network on rare cancers

M5: Prepare 6 reports on the results of the workshops to train patients and discuss the results of the survey to identify centers of expertise

Action:– To disseminate the outcomes of the surveys and

compile a consensus report on feedback. Disseminate this to WP leaders for feedback.

– Communication Medium – ECPC website, FACE website, European Parliament, European Commission.

– Through Policy Platfforms such as the European Partnership for action Action Against Cancer.

Information network on rare cancers

Other deliverables of project will be disseminated by ECPC:

Organizing Meeting with MEPs

Policy Makers at the EU and National level

Conveying these points at the national level through our member organisations so highlighting outcomes

Information network on rare cancers

THANK YOU!

Prof Francesco De LorenzoVice President, ECPC

President, FAVO