Report on Activities of WWGM (India) for the year

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1 Report on Activities of WWGM (India) for the year 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. 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.

2 Awareness Campaigns International Day for Persons with Disability December 3 rd, 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. ( at- inclusive- development/article 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

3 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.

4 Newspaper articles and interviews

5 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 6 th, 2016 (annexure 4). An interview based on this article was also published on April 3 rd, 2016 ( Future activities for A workshop entitled To Develop a Scientific Program for Research on Rare Diseases is being organized during rd April, 2016 at INSA, New Delhi. 2. A roundtable discussion on assistive devices is being planned for September, Disability mapping campaign to be organized on December 3 rd, 2016, World Disability Day 4. Rare Disease essay competition and awareness drive to be organized on Feb 28, 2016.