WWGM is committed to spreading awareness of GNE Myopathy in particular and rare diseases in general. Many rare diseases, and particularly those involving muscular function cause disability and impairment. Accordingly, an integral part of our community outreach efforts involve raising awarness of disability and problems of accessability. Some of our community outreach efforts are listed below.
If you would like to be involved with us in reaching out to the community please contact us or visit our Support Us page.
Our disability awareness efforts are focused around World Disability Day which falls on December 3. In 2015 our aim was to raise awareness of disability among the youth and children with specific regard to barriers to accessibility faced by the disabled. Further to this, we distributed a specially designed poster in a number of schools, educational institutions, residential neighbourhoods and corporate offices in New Delhi and Mumbai. Our volunteers also made presentations to school children on these issues.
On the occasion of World Rare Disease Day on February 28, 2016, WWGM organised an essay contest for school children to induce awareness about rare diseases. The essay contest was publicised in many schools, on Television, in a leading Indian national daily newspaper and on social media. The winner of the essay contest was Ms. Sheena Kasana of Guru Harkrishan Public School in New Delhi who wrote an inspiring essay about her experience with a rare disease.
Rare Disease Awreness
Poster Courtesy: Sanghamitra Goswamy
Part of our community outreach efforts involve advocating for laws and policies on rare diseases. We consider this important given our headquarters in India, where there is no policy on rare diseases and much needs to be done for the government to recognise rare diseases. We have been active on this front with various advocacy efforts.One of these was an opinion piece published in a leading nationaly daily, The Hindu.
Our team member and patient advocate, Tara Voogel has been extensively involved in raising awareness of GNE Myopathy in the community. Here we list some of her work in the recent past:
Tara was involved in this short video made by the Neuromuscular Disease Foundation which gives a brief historical transmission of GNEMyopathy, its diaspora, and current therapies. The video is titled ‘Bracing For Life’ -https://vimeo.com/190395430
Tara was also featured in this media piece - My Family’s Journey towards a diagnosis: http://www.raredr.com/news/the-long-journey-to-a-gnem-diagnosis
It took four decades for Tara and her family to get a correct diagnosis – see page 11 of The Myositis Newsletter.
Further, Tara was featured in this video at the Global Genes Conference:
Tara with other GNE Myopathy patients attended a Rare Disease Day to help raise awareness of this disease -“When the Doctor Has No Answers” http://www.sandiegouniontribune.com/business/biotech/sdut-sanford-burnham-rare-disease-2015mar08-htmlstory.html