World Without GNE Myopathy (WWGM)

We live in a world with #GNEMyopathy, but are making way to become a #WorldWithoutGNEMyopathy.

Support our cause :

[World Without GNE Myopathy (WWGM) @wwgnem]

📆 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

[Tata Institute for Genetics and Society, India @TIGS_India]

📢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

[World Without GNE Myopathy (WWGM) @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! 💙

[World Without GNE Myopathy (WWGM) @wwgnem]

How can workplaces be made more inclusive?

We spoke to Mr. Arman Ali, Executive Director, @ncpedp_india, to find out strategies to make the workplace more inclusive for people with #RareDiseases.

#FebRAREuary #RareAtWork #RareDiseaseDay #InclusiveWork #ReasonableAccomodations

[World Without GNE Myopathy (WWGM) @wwgnem]

#FebRAREuary #RareAtWork

Learn from yesterday, live for today and hope for tomorrow! Experiences in the workplace can be positive too!

#RareDiseaseDay #RareDisease #Inclusion #GNEMyopathy #ShowYourColours

[World Without GNE Myopathy (WWGM) @wwgnem]

This is the journey of Shubhra Sinha - a story of resilience, innovation and allyship.

Her #RareDisease did not stop her from becoming an Associate VP of...

In her own words at https://t.co/M1g24tYsAW

#RareAtWork #RareDiseaseDay #GNEMyopathy #DEI #Inclusion #FebRAREuary

[World Without GNE Myopathy (WWGM) @wwgnem]

#FebRAREuary #RareAtWork #BustingMyths

Too often, assumptions replace the truth — leading to biased hiring decisions that have nothing to do with ability, skill, or potential. We break down some of these myths.

#RareDiseaseDay #RareDiseases #InclusiveLeadership #GNEMyopathy

[World Without GNE Myopathy (WWGM) @wwgnem]

#FebRAREuary #RareAtWork

Inclusion isn’t meaningful if growth is restricted and credibility is questioned.

The real measure of equity isn’t hiring numbers.

It’s who gets promoted.

Who gets trusted.

Who is seen as capable.

#RareAndAble #RareDiseaseDay #InclusiveEmployment

[World Without GNE Myopathy (WWGM) @wwgnem]

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

[World Without GNE Myopathy (WWGM) @wwgnem]

#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

[World Without GNE Myopathy (WWGM) @wwgnem]

#FebRAREuary highlights the realities of working with a #RareDisease

Work challenges faced by people with rare diseases are not about capability — they are about systems that fail to adapt.

#RareAtWork #ShowYourColours #InclusiveLeadership

[World Without GNE Myopathy (WWGM) @wwgnem]

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

[World Without GNE Myopathy (WWGM) @wwgnem]

#FebRAREuary #RareAtWork

#RealStories of people with a #RareDisease in the #JobMarket

"If you're honest about your health, employers are unwilling to give you a chance."

#DEI #Accessibility #InclusiveLeadership #DisabilityInclusion #TechforGood #FebRAREuary2026

[World Without GNE Myopathy (WWGM) @wwgnem]

To donate and help someone with a rare disease find their purpose visit:

https://t.co/V8RUe1YgAq

Source: https://t.co/xiTVeaJEEf.

#RareDiseaseDay #FebRAREuary2026 #RareAtWork #ShareYourColors

[World Without GNE Myopathy (WWGM) @wwgnem]

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.

[World Without GNE Myopathy (WWGM) @wwgnem]

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

[World Without GNE Myopathy (WWGM) @wwgnem]

💡 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

[World Without GNE Myopathy (WWGM) @wwgnem]

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!! 🧬

[World Without GNE Myopathy (WWGM) @wwgnem]

📣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🔬🧬

[World Without GNE Myopathy (WWGM) @wwgnem]

Peace, Justice and Liberty for all. What we strive towards, is what will define us.

#HappyRepublicDay2026