A thread that recaps the launch by Journal of Biosciences and the #Research presented at the event. 🧵

Tata Institute for Genetics and Society, India

🎙️ #Research_At_WWGM

The Journal of Biosciences, co-published by Springer & IASc, Bengaluru, has come out with a special issue entitled ‘The Rare Genetic Disease Research Landscape in India’, co-edited by WWGM's Profs. Alok & Sudha Bhattacharya & Dr. Rakesh Mishra of Tata Institute for Genetics and Society, India.

🧬 #FebRAREuary 💞

Happy #RareDiseaseDay to our vibrant community!

Our campaign this year shed light on the crucial role women have played in the Rare community, and how their strengths have formed the backbone for tremendous progress in the community.

Here's to us! 🌟🌟🌟🌟

This #RareDiseaseDay2024 we are back with a new #podcast episode.

A deep dive to understand GNE Myopathy on the new episode of 'Demystifying Rare Genetic Disease'!

Listen now for insights for #patients , #researchers & anyone curious about #RareDiseases .

open.spotify.com/episode/20PGSc…

🧬 #FebRAREuary ⏪

As the campaign draws to a close this year, here's a quick #Recap of key takeaways from the campaign this year.

#RareDisease #RareWomen #GNEMyopathy

🧬 #FebRAREuary ♀️

What do women in our community need?

Women with #RareDiseases , like anyone facing a health challenge, have unique needs that often require a comprehensive and individualized approach...

Read in full at gne-myopathy.org/feb-rare-uary-…

#RareDiseaseDay #GNEMyopathy

🧬 #FebRAREuary 🧪

The US FDA finalized a guidance on 26th December 2023, on drug development programs for rare diseases. It is aimed at assisting orphan drug sponsors and covers nonclinical pharmacology and...

Read more at gne-myopathy.org/feb-rare-uary-…

#GeneTherapy #DrugDevelopment

🧬 #FebRAREuary ♀️

#SexualDevelopment is a crucial aspect of human life, but within this intricate process, there exists a category of rare diseases affecting sexual health that pose unique challenges...

Read in full at gne-myopathy.org/feb-rare-uary-…

#RareWomen #Pregnancy #Birth

🔖 #WWGM_Research_Pick

IASc, Bengaluru is releasing a special issue of its Journal of Biosciences, called 'The Rare Genetic Disease Research Landscape in India' on the 28th of Feb, 2024 at 5PM.

View this educational and informative event live at youtube.com/watch?v=y-IT9f…

#FebRAREuary

🧬 #FebRAREuary ♀️

#ReproductiveHealth is a fundamental aspect of a woman's well-being.. For #RareWomen , the journey towards reproductive health is often laden with unique challenges..

Read more at gne-myopathy.org/feb-rare-uary-…

#GNEMyopathy #SexualHealth

🧬 #FebRAREuary ♿

Kam Redlawsk shows what is possible even when all possibilities end. She helped to expand GNE Myopathy advocacy in America, and connected GNE Myopathy patients...

Read more much at gne-myopathy.org/feb-rare-uary-…

#RareDiseaseDay #RareWomen #GNEMyopathy #WomenInFocus

🧬 #FebRAREuary 🎈

Kam Redlawsk is an award-winning patient advocate, designer, artist and writer...As an advocate, Kam has been a voice for the rare disease and disabled communities for over 15 years...

Read more at gne-myopathy.org/feb-rare-uary-…

#RareDiseaseDay #RareWomen

🧬 #FebRAREuary 📣

NORD (NORD), is a remarkable American nonprofit dedicated to supporting those with rare conditions. Here's a quick peek into their journey..

Read more at gne-myopathy.org/feb-rare-uary-…

#RareDisease #OrphanDrugAct #RareDisease Day #GNEMyopathy #AbbeyMeyers

🧬 #FebRAREuary 📣

#AbbeyMeyers : A Trailblazer in #RareDiseaseAdvocacy

Abbey Meyers became a pioneering force in rare disease advocacy during the 1970s when her son was diagnosed with Tourette syndrome..

Read more at gne-myopathy.org/feb-rare-uary-…

#RareDiseaseAdvocate #GNEMyopathy

🧬 FebRAREuary ⚖️

How has #JusticePratibhaSingh taken decisive action on #RareDiseases ? 👩‍⚖️

Read the full story at gne-myopathy.org/feb.../feb-13-…

#HealthForAll #RareDiseasePolicy2021
#GNEMyopathy #JusticeForRareDiseases

🧬 #FebRAREuary spotlights a #RareMother ✨

#SpinalMuscularAtrophy is a rare disease found in an estimated 1 in every 6k-10k people. It is a progressive genetic disorder that affects the motor nerve cells in the spinal cord...

Read more at gne-myopathy.org/feb-rare-uary-…

#Motherhood

🎙️ #Research_At_WWGM

WWGM and Tata Institute for Genetics and Society, India are jointly organising a 'Discussion Meeting on Rare Genetic Disease Drug Trials' on 13th February 2024, 2:30-5.00 PM.

Do not miss! Register now at gne-myopathy.org/discussion-on-…

#RareDisease #RareDisease Day #GNEMyopathy

🧬 #FebRAREuary 🌠

Meet Sirisha Kv : An Inspiring OI Warrior.

Born with #OsteogenesisImperfecta , also known as Brittle bone disease, a rare genetic disorder, Sirisha's journey is a...

Read more at gne-myopathy.org/feb-rare-uary-…

#DiversityAndInclusion #RareDiseaseDay #RareWomen

🧬 #FebRAREuary 🏅

A recipient of the EURORDIS-Rare Diseases Europe Black Pearl Award, Dr. Luisa Maria Botella Cubells stands out in the rare disease community for her patient-centric...

Read more at gne-myopathy.org/feb-rare-uary-…

#GNEMyopathy #RareDiseaseDay #RareWomen #WomenInScience

🧬 #FebRAREuary 🧠

“Despite cultural and economic differences, families of children with rare diagnoses want to know the same things” she says in an interview..

Read more at gne-myopathy.org/feb-rare-uary-…

#GNEMyopathy #RareDiseaseDay #RareWomen #WomenInFocus