Debjani Chowdhury (@save_arian) 's Twitter Profile
Debjani Chowdhury

@save_arian

Arian, our only child has Hunter Syndrome (MPS-II),a rare, genetic and terminal disease. Here to raise awareness about MPS and other #RareDiseases #SaveArian

ID: 595510273

calendar_today31-05-2012 13:58:08

8,8K Tweet

1,1K Followers

152 Following

EURORDIS-Rare Diseases Europe (@eurordis) 's Twitter Profile Photo

How should we talk about rare diseases to effectively hold people’s attention? 🤔 At this training we will discover how to talk about important matters in a simple and accessible way, adapted to your audience. Learn more: ℹ️ cutt.ly/O863mzd

How should we talk about rare diseases to effectively hold people’s attention? 🤔

At this <a href="/EJPRareDiseases/"></a> training we will discover how to talk about important matters in a simple and accessible way, adapted to your audience.

Learn more:
ℹ️ cutt.ly/O863mzd
National MPS Society (@mpssociety) 's Twitter Profile Photo

Day 5: How is a child diagnosed with MPS or ML? #MPSML are inherited degenerative #rarediseases. Early diagnosis is vital to stop irreversible damage to cells & organs. We passionately #advocate lawmakers to bolster #newbornscreenings. #Hope Join us! 👉🏽mpssociety.org/advocate/

Day 5: How is a child diagnosed with MPS or ML?
#MPSML are inherited degenerative #rarediseases. Early diagnosis is vital to stop irreversible damage to cells &amp; organs. We passionately #advocate lawmakers to bolster #newbornscreenings.  #Hope
Join us! 👉🏽mpssociety.org/advocate/
Debjani Chowdhury (@save_arian) 's Twitter Profile Photo

International MPS Awareness Day will be observed on 15th May to raise awareness about MPS and other related diseases. Pl help spread the word. The day to remember those children and adults suffer from MPS disease. #MPSAwareness2023 #RareDisease #endHunterSyndrome

Debjani Chowdhury (@save_arian) 's Twitter Profile Photo

Today is International MPS Awareness Day. It is observed on 15th May every year to raise awareness about MPS and other related diseases. The day to remember those children and adults suffer from MPS diseases. #MPSAwareness2023 #RareDisease

MPS Society UK, here for those with rare diseases (@mpssocietyuk) 's Twitter Profile Photo

Coarse facial features is a key symptom of MPS and include having a short neck, the bridge of the nose being flat and a wider mouth with an enlarged tongue. Teeth can also be widely spaced and poorly formed & the chin can sometimes be prominent with a square jaw. #ChaseTheSigns

Coarse facial features is a key symptom of MPS and include having a short neck, the bridge of the nose being flat and a wider mouth with an enlarged tongue. Teeth can also be widely spaced and poorly formed &amp; the chin can sometimes be prominent with a square jaw. #ChaseTheSigns
Debjani Chowdhury (@save_arian) 's Twitter Profile Photo

We are with Dr. Joseph Muenzer, paediatric geneticist and professor, North Carolina University, Chapel Hill, USA. He is the torch bearer for MPS-II Disease ( Hunter Syndrome). We are grateful and blessed 🙏❤️ #huntersyndrome #lsds #saveArian

We are with Dr. Joseph Muenzer, paediatric geneticist and professor, North Carolina University, Chapel Hill, USA. He is the torch bearer for MPS-II Disease ( Hunter Syndrome). We are grateful and blessed 🙏❤️
#huntersyndrome #lsds
#saveArian
Anil Raina (@anilraina1969) 's Twitter Profile Photo

And we are still in mourning because of our lousy performance in WTC2023! Incredible India - no media coverage, no noise around this. Way to go, ladies in blue! fb.watch/l7BRPy6U7q/?mi…

Debjani Chowdhury (@save_arian) 's Twitter Profile Photo

Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. #RareDisease #SaveArian

Debjani Chowdhury (@save_arian) 's Twitter Profile Photo

International MPS Awareness Day will be observed on 15th May to raise awareness about MPS and other related diseases. Pl help spread the word. The day to remember those children and adults suffer from MPS diseases. #MPSAwareness2024 #RareDisease

Yashwant Deshmukh 🇮🇳 (@yrdeshmukh) 's Twitter Profile Photo

The real Double Gold Medal winner is this frail shy lady : #GrandmasterAmma #NagaLakshmi : Mother of Praggnanandhaa and Vaishali. Her son in the Men's gold medal winner team and her daughter in the Women's gold medal winner team.. how cool is that !! #GrandmasterAmma

The real Double Gold Medal winner is this frail shy lady : #GrandmasterAmma #NagaLakshmi : Mother of Praggnanandhaa and Vaishali. Her son in the Men's gold medal winner team and her daughter in the Women's gold medal winner team.. how cool is that !!  #GrandmasterAmma