Sib Sankar Chowdhury

Knowledge of rare diseases is the prime need of the hour. My fighter son Arian has #HunterSyndrome #SaveArian

[Sib Sankar Chowdhury @Rare_Mission]

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

[Sib Sankar Chowdhury @Rare_Mission]

28 February 2023 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay @eurordis

[Rare Disease Day @rarediseaseday]

Simone is an 8 year old from Italy, living with PMLD.

After years of investigations, his mum and dad set up the Piccolo Grande Guerriero Association.

Read Simone's story here: https://t.co/a1x8nm1rpt
Share your story here: https://t.co/kKUw8KJZDq

[Rare Diseases India Foundation @RDIFoundation]

Rare Disease Community members, Patients, Caretakers and Health Professionals are cordially invited to join our webinar on Gaucher Awareness Day on 1st October at 10:30 am organised by @RDIFoundatiion and supported by @TakedaPharma

[Dr Jayesh J Sheth @jshethad1]

https://t.co/Eg5h5NuGPY # Life #Genetics#thyroid# https://t.co/HTZPrWY28V

[Sib Sankar Chowdhury @Rare_Mission]

Pl help save Kushal -
https://t.co/5frwigzxWh
cc: @Jyothsnareddyk2

[Sib Sankar Chowdhury @Rare_Mission]

https://t.co/3WFK83oxad

[MPS Society UK, here for those with rare diseases @MPSSocietyUK]

Are you free this Tuesday evening? Are you an adult sibling of someone who has a rare disease who would like to meet others who understand what life as a sibling is like? Grab a cuppa and join our online support session on 8 June at 7pm. Register here: https://t.co/vRY9dbYsbE

[Rare Disease Day @rarediseaseday]

Join the #Resolution4Rare !

The rare disease community is urging countries to adopt a UN 🇺🇳 Resolution for People Living with a #RareDisease. Use the advocacy materials to spread the word! 📣

👉https://t.co/cIc8sg8SXL

[Sib Sankar Chowdhury @Rare_Mission]

Alone we are RARE, together we are STRONG. Let’s join hands to raise our voice for the rare disease patients. #CareTheRare A rare disease is any disease that affects a small percentage of the population. Most rare diseases are genetic #RareDisease

[Sib Sankar Chowdhury @Rare_Mission]

Cyclone #Yaas

[Debjani Chowdhury @Save_Arian]

The cyclone is very likely to enter West Bengal and North Odisha on Wednesday. Strong winds and heavy rainfall have already started. Stay safe and strictly follow Govt advisory
#CycloneYaas

[Sib Sankar Chowdhury @Rare_Mission]

Challenges=
Limited awareness amongst health care providers regarding diagnosis, therapy and prevention
Lack of
-access to treatment with ERT’s,
-any kind of diagnostic facilities (including pre-natal) for testing and prevention of LSDs
-dedicated personnel for supportive care

[Sib Sankar Chowdhury @Rare_Mission]

Hunter syndrome is a lysosomal storage disease caused by a deficient (or missing) enzyme. In simple words, it is a serious genetic metabolic disorder

[World Health Organization (WHO) @WHO]

#COVID19 threatens the health and well-being of everyone in the planet.
Join global leaders discuss urgent strategies to end the pandemic at the World Health Assembly #WHA74 from 24 May-1 June 2021 https://t.co/3GJsOy28xG

[MPS Society UK, here for those with rare diseases @MPSSocietyUK]

With #MPSAwarenessWeek coming to a close, please donate to fund our vital services and ask your friends and family to donate too https://t.co/XvE4dAljps
#MPSAwareness #EverybodyIn

[Sib Sankar Chowdhury @Rare_Mission]

MPS and related diseases are not well known to all. Pl follow and help us to raise awareness about the diseases

[Debjani Chowdhury @Save_Arian]

Today is International MPS Awareness Day !

[Debjani Chowdhury @Save_Arian]

The mucopolysaccharidosis (MPS) diseases are rare, genetic disorders. The symptoms of MPS diseases often appear in early childhood and worsen over time, leading to possible organ failure and reduced life expectancy.
Courtesy : @TakedaPharma @Projectalive @Rare2Aware 🙏