Tag: GNE Myopathy | Varta Trust

This graphic shows a colourful, roughly circular word cloud created with key words and phrases that appear in the accompanying article. The key words used in the graphic include disability, rare diseases, hope, potential, champion, possibilities, technology, accessibility and allyship. The word cloud, with a mix of colours like blue, green, magenta, purple and amber, appears on a white background. The shape, colours and the text of the graphic together seem to create a strong symbol of positivity and empowerment. Graphic credit: Pawan Dhall

Where there’s a will, there’s a champion!

By Shubhra Sinha

‘FebRAREuary2026’ was a month-long campaign on spreading awareness about rare diseases organized by World Without GNE Myopathy, Delhi. Shubhra Sinha shares her story written for the campaign

This illustration is a combination of a photograph and a visual of an order issued by the University Branch of the Department of Higher Education, Government of West Bengal directing a reservation of at least 5 percent for persons with disabilities in university admissions across all categories. The photograph shows a rally taken out by the Jadavpur University’s Forum for Students with Disabilities in 2017, almost a year before the reservation order was issued. Around 15 people, all males, can be seen walking behind a large banner that says “March for Rights in Higher Education and Justice for Students with Disabilities – Forum for Students with Disabilities”. The text is written in big bold letters in red on a white background. To the top right corner of the photograph is a small inset that shows the government order on reservations (full text of the order can be read in the associated article). Photo credit: Shampa Sengupta

Clickhappy! Jan '19

Conversations in disabilities, diversities in conversations

By Shampa Sengupta

Shampa Sengupta on a round-up of positive developments for disability rights in end 2018

Insight Jan '17

Reflections of a person living with a rare disease

By Shilpi Bhattacharya

Shilpi Bhattacharya is a person living with GNE myopathy and wants to raise a voice to spread awareness about it and demand treatment research Someone told me it’s like coming...

Tagged Under: GNE Myopathy

Where there’s a will, there’s a champion!

Conversations in disabilities, diversities in conversations

Reflections of a person living with a rare disease

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