Sib Sankar Chowdhury @Rare_Mission
Knowledge of rare diseases is the prime need of the hour. My fighter son Arian has #HunterSyndrome #SaveArian Kolkata, India Joined January 2017-
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Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families
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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
Sib Sankar Chowdhury retweeted
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: cutt.ly/FLvVxKy Share your story here: cutt.ly/EPlcuja
Sib Sankar Chowdhury retweeted
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
Sib Sankar Chowdhury retweeted
lnkd.in/dUcyhvsU # Life #Genetics#thyroid# lnkd.in/dS2ZsJP9
Pl help save Kushal - milaap.org/fundraisers/su… cc: @Jyothsnareddyk2
Sib Sankar Chowdhury retweeted
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: buff.ly/3p9RTC9
Sib Sankar Chowdhury retweeted
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! 📣 👉rarediseasesinternational.org/resolution4rar…
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
Cyclone #Yaas
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
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
Hunter syndrome is a lysosomal storage disease caused by a deficient (or missing) enzyme. In simple words, it is a serious genetic metabolic disorder
Sib Sankar Chowdhury retweeted
#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 bit.ly/2R0TLkg
Sib Sankar Chowdhury retweeted
With #MPSAwarenessWeek coming to a close, please donate to fund our vital services and ask your friends and family to donate too bit.ly/3hoeOb9 #MPSAwareness #EverybodyIn
MPS and related diseases are not well known to all. Pl follow and help us to raise awareness about the diseases
Sib Sankar Chowdhury retweeted
Today is International MPS Awareness Day !
Sib Sankar Chowdhury retweeted
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 🙏
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Vidya CA @vidyaca4
81 Followers 128 Following I will WIN. Not immediately BUT DEFINITELY. My son was diagnosed with Hunter syndrome in 2015. #EndHunterSydrome
Debjani Chowdhury @Save_Arian
930 Followers 150 Following 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
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Arushi Batra, PhD @Arushi_Batra28
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Umme H. Faisal, MBBS @stethospeaks
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592K Followers 103 Following Our posts are FDA Approved! Privacy Policy - https://t.co/LbTJXYRXVP FDA Authentic Accounts - https://t.co/w2LNbzG7M0
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81 Followers 128 Following I will WIN. Not immediately BUT DEFINITELY. My son was diagnosed with Hunter syndrome in 2015. #EndHunterSydrome
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