📆 Webinar Alert!
Medanta Institute of Education and Research along with WWGM is organising a Webinar on "Why Patient Participation Matters", on the 31st of March, 2026.
Participation is free! Register asap at https://t.co/zLMiVtWJUD!
#RareDisease#GNEMyopathy#Research
📢How can India accelerate innovation, clinical research, and access to care for #RareDiseases?
Our latest white paper outlines key priorities to strengthen the ecosystem.
Access here🔗https://t.co/9MIvqgz9oq
@3RakeshMishra@GayatriSaberwal Alok Bhattacharya
@wwgnem
Rare is Strong. Rare is Proud.
To everyone fighting a rare battle, you are an inspiration! You are strong and your courage is your greatest strength.
Together, let’s make a difference! Let’s keep fighting for change and a brighter future!
Happy #RareDiseaseDay! 💙
Want to be a part of change? This #RareDisease month join us in impacting the life of someone.
Your contribution could help give a second chance to someone living with #GNEMyopathy by funding their business or financing research towards a cure!
#FebRAREuary#RareDiseaseDay
#FebRAREuary#RareAtWork with Roberta Cirisyan
➡️ Finding the 'perfect' job requires accessibility, transport, feasibility to work with a disability...
➡️ Work from home vs. at the workplace - do employers want us at the workplace?
➡️ We are not normal people
#RareDiseaseDay
Being open about a diagnosis is essential to get accommodations at the workplace. Yet, could it be seen as a sign of weakness and vulnerability?
Will employers react to it positively? These are the worries of living with a #RareDisease.
#RareDiseaseDay#FebRAREuary#RareAtWork
Work doesn’t need one rigid model.
Flexibility isn’t a trend; it’s access.
For people living with rare diseases like #GNEmyopathy, inclusive work makes participation possible.
Behind every diagnosis of a rare disease, is a career journey that has been forever altered. #FebRAREuary presents a comprehensive analysis on the impact the rare disease community has endured as they deal with unemployability and navigating the workspace.
#RareAtWork
💡 Why talk about #Working with a #RareDisease?
For many people living with rare diseases, work shapes far more than income. Without inclusive opportunities, financial vulnerability and long-term insecurity become real challenges.
#RareAtWork#WorktheRareWay#FebRAREuary26
Work is an essential part of our lives. It is not easy for people living with rare diseases to work. We dive into the challenges of working with a RD, discuss ways to change this & celebrate the resilience & commitment to push through while being #RareAtWork!
Stay tuned!! 🧬
📣We are back!! ✨
Mark your calendars 🗓️ for FebRAREuary2026!
FebRAREuary is a month long campaign dedicated to spreading awareness about #RareDiseases.
Stay tuned to learn more about how YOU can make a difference‼️
Leading change for a #WorldWithoutGNEMyopathy🔬🧬