🖌️ #Rare_Art Living with a #RareDisease - "As much as we are grateful for the support that we get, deep down we want to be independent and do our daily, basic tasks by ourselves." #FebRAREuary #TurningRAREIntoArt #GNEMyopathy #RareDiseaseDay

🧬 #RAREComics "No Cure" People living with #RareDiseases find it hard to face the prospect of life with a severe disease with no treatments. This vulnerability is exploited by scammers peddling fake cures or making false claims about treatments. 🖌️ by Pixel Trove #RareLives

Living with a #RareDisease - "Having any health issues can be expensive. Living with a rare disease, which requires a lifetime of daily physiotherapy and other costs, can increase expenses multifold. Working is also difficult. We wish that money would actually grow on trees!"

✍️ #RARE_Art "Our #RareDisease does not only take a toll on our physical health but also on our #MentalHealth." 🎨 by Sheetal #RareLife #GNEMyopathy #FebRAREuary

#RAREComics Chapter 4 - Cure When people living with rare diseases and their loved ones come together, they can forge a path towards a cure. 🖌️ by Pixel Trove #FebRAREuary #TurningRareIntoArt #RareDiseaseDay #GNEMyopathy #RareLives

Please support the mission of creating a World Without GNE Myopathy by donating to our #Research and #Advocacy efforts for #GNEMyopathy. Even a little bit goes a long way! #RareDiseaseDay #PatientFundedResearch

🧬 #HopeForHealing Today, we stand together in support of those affected by rare diseases. #RareDiseaseDay reminds us to spread awareness, support research & show solidarity with the rare disease community. 🌿 Believe there is hope for healing📅 28 February 💙 #FebRAREuary

❤️ As another edition of #FebRAREuary comes to an end, we want to thank you for following and supporting our campaign to raise awareness of rare diseases. We hope you enjoyed #TurningRAREintoArt & #ComicsForACause. Read more at shorturl.at/jqPBl 😊

🔊 #Conference #Alert Only one week to go for WWGM's Annual Conference. It's online and free for anyone to attend. Expect to hear from various scientific, medical and other experts on #RareDiseases and #GNEMyopathy. To register please visit gne-myopathy.org/annual-confere…

🌿 Voices of Change: WWGM Annual Conference 2025 🎤✨ Meet the incredible speakers shaping the future at the WWGM Annual Conference ‘25! 🧬💡 Join us on March 8th & 9th as experts from around the world come together to share insights, research, and innovations. Stay tuned! 🔬🌎

🌿 Voices of Change Meet the incredible speakers shaping the future at the WWGM Annual Conference ‘25! 🧬💡 Join us on March 8th & 9th by registering at gne-myopathy.org/annual-confere… #WWGMConference #VoicesOfChange #GNEMyopathy #RareDiseaseResearch #MedicalInnovation

🎤 🩺 Meet the next round of incredible speakers shaping the future at the WWGM Annual Conference March 8 & 9, ‘25! 🧬💡 Dr. Vishnu V Y, Dr. Satish Khadilkar and Dr. Soaham Desai! Register now at gne-myopathy.org/annual-confere… #WWGMConference #VoicesOfChange #GNEMyopathyAwareness

🎤 Meet the incredible speakers shaping the future at the WWGM Annual Conference March 8 & 9, ‘25! 🧬💡 Dr Arkasubhra Ghosh, Dr. Ravi Manjithaya and Dr. Munia Ganguli For more information and to register for this event please visit gne-myopathy.org/annual-confere… #WWGMConference

🎤 🌏 Meet the incredible global leaders shaping the future of #GNEMyopathy at the WWGM Annual Conference March 8 & 9, ‘25! 🧬💡 Dr Paul Martin, Ms. Michela Onali, Dr. Jin-Hong Shin, and Dr. Wakako Yoshioka #VoicesOfChange #RareDiseaseResearch

WWGM says #ThankYou! ❤️

✍️ #TheGNEDialogues This is the story of Prasanna and his daughter Nidhi, a patient of Pompe Disease. Written by Prof. Sudha Bhattacharya, WWGM. Read in full at gne-myopathy.org/post/applying-… #PompeDisease #RareDisease #GNEMyopathy

.Delhi Customs ACC Export, as you point out below, 9804 for individual imports has exemptions under Customs notification 50/2017, so WHY not applied here for a disabled person's assistive aid? P.N. 6/2021 of 19-2-21 needs reissuing to include PwD exemptions / exceptions! #WhyTaxDisability

📢Introducing the line up and schedule for ACTRaD 2025! ACTRaD is a 2-day National Conference focused on advancing Clinical Trials in Rare Diseases in India. Wish to participate in online mode? Register below 🔗forms.gle/JbPEyWAkAENEno… 📍Indian National Science Academy (INSA) 📅July 25–26 1/2

ACTRaD 2025, a National Conference focused on advancing Clinical Trials in Rare Diseases is under way! The coming two days, stakeholders will deliberate on key aspects of #RareDiseases trials in India. World Without GNE Myopathy (WWGM) ORDIndia AIIMS Guwahati ICMR ISCR

Where the mind, body and heart are without fear and full of love. #HappyIndependenceDay2025