Report  on  Activities  of  WWGM  (India)  for  the  year  2015-­‐2016  

The  major  emphasis  of  the  trust  has  been  to  increase  awareness  about  GNE  Myopathy  and  other  Rare  Diseases  along  with  Disability  as  GNE  Myopathy  does  lead  to  physical  disability.  Since  information  about  GNE  myopathy  is  lacking,    we  have  set  up  a  website  that  provides  all  possible  information  including  current  state  knowledge  in  diagnosis  and  treatment.  The  site  contains  detailed  information  including  current  state  of  knowledge  in  discovery  of  new  therapeutics  and  acts  as  a  support  for  patients  and  their  relatives.  A  few  screen  shots  give  a  glimpse  of  the  site.  

www.gne-­‐myopathy.org  

 

 

One  of  the  important  features  of  the  site  is  widespread  reach  as  many  patients  and  families  around  the  World  are  consulting  our  site  for  information  and  also  contribute  to  the  site.  This  is  reflected  in  the  sections  on  “my  stories”.  We  are  constantly  updating  the  site,  providing  new  information.  We  would  like  this  site  to  be  a  source  of  information  for  clinicians  as  many  of  them  are  not  aware  of  this  disease  and  are  not  able  to  diagnose  or  manage.  

 

Awareness  Campaigns  

“International  Day  for  Persons  with  Disability”  December  3rd,  2015  

WWGM  decided  to  launch  an  awareness  program  to  make  young  students  and  professionals  aware  of  the  problems  faced  by  persons  with  disability  (PWD)  and  participate  in  identifying  public  spaces  that  are  accessible  for  PWDs.  In  this  regard  two  posters  were  designed  and  printed.  These  were  distributed  to  the  following  schools  and  educational  Institutions.  (Annexure  1)  

1. DPS  Vasant  Kunj  School  2.  Vasant  Valley  School  3. DAV  Vasant  Kunj  4. Bloom  Public  School,  Vasant  Kunj  5. Ryan  International  School,  Vasant  Kunj  6. Mother’s  International  School  7. DPS  R.K.  Puram  8. Poorna  Pragna  School,  Vasant  Kunj  9. Masonic  Public  School,  Vasant  Kunj  10. Jawaharlal  Nehru  University  11. GGS  Indraprastha  University  12. IIT  Delhi  13. Delhi  University,  South  campus  

In  addition  posters  were  also  distributed  to  a  few  corporate  offices  and  to  the  RWA  in  neighborhood  of  Vasant  Kunj.  It  was  also  distributed  by  Rushabh  Desai  in  all  India  branches  of  his  office  (Motilal  Oswal)  

Modern  Era  Convent  Senior  Secondary  School,  Janakpuri  organized  special  lectures  by  their  teacher  Ms  Mallika  Babuta  to  different  groups  of  students  on  PWDs  and  accessibility  mapping  of  public  places.  This  presentation  material  was  prepared  by  WWGM  for  Students  and  can  be  used  elsewhere.  We  could  not  involve  college  students  as  they  are  all  having  their  final  exams  at  this  time.  We  propose  to  interact  with  them  in  January  when  the  colleges  re-­‐open.  

In  an  article  in  the  newspaper  ‘The  Hindu’,  our  point  of  view  was  recorded  as  a  quote  from  one  of  our  trustees  Prof.  Sudha  Bhattacharya.  (http://www.thehindu.com/news/cities/Delhi/looking-­‐at-­‐inclusive-­‐development/article7942792.ece)  (annexure  2)  

Rare  Disease  Day  Feb  29,  2016  

In an effort to encourage awareness about rare diseases that quite often lead to disability, WWGM organized an essay contest and awareness campaign by distributing information regarding rare diseases in public places of Delhi. Information regarding essay contest was send to large number of Schools and was also flashed in a TV channel ( ) and a leading newspaper (Hindustan times). A poster announcing essay contest is included in the annexure 3 and the newspaper announcement is in annexure 4. A girl from Guru Harkrishan Public School has been selected for the first prize of Rs. 3000.00.

Our team comprising of Shilpi Bhattacharya, Alok Bhattacharya, Sudha Bhattacharya, Sanghamitra Goswami, Ipsita Sengupta and Prachi Mishra went to Vasant Sqaure Mall, Sector B-1, Vasant Kunj (from 12 noon to 3.00 pm); and Vasant Lok shopping complex, Vasant Vihar (from 4.00 pm to 6.00 pm), for our campaign. We displayed a banner (photograph attached) to attract the attention of shoppers, and distributed copies of the pamphlet (Appendix ..) prepared for the awareness campaign. We explained to all interested individuals about the diversity and prevalence of rare diseases and the need to draw the attention of Government and all stake holders to devote resources for treatment and management of these neglected diseases. Many of the individuals we met showed a lot of interest and they gave us their contact details. We have compiled a list of these individuals who are “Friends of WWGM”. The picture shows some of our members in one of the location during the campaign.

Newspaper articles and interviews

Our trustees have been busy in spreading awareness about rare diseases and the need for a special policy that Government should implement. Shilpi Bhattacharya published an article entitled ‘policy shame: sick, rare and ignored’ in Hindu on March 6th, 2016 (annexure 4). An interview based on this article was also published on April 3rd, 2016 (http://www.dnaindia.com/health/report-the-silent-minority-2197469)

Future activities for 2016-17.

1. A workshop entitled ” To Develop a Scientific Program for Research on Rare Diseases” is being organized during 22-23rd April, 2016 at INSA, New Delhi.

2. A roundtable discussion on “assistive devices” is being planned for September, 2016. 3. Disability mapping campaign to be organized on December 3rd, 2016, World

Disability Day 4. Rare Disease essay competition and awareness drive to be organized on Feb 28,

2016.