Indian Prader-Willi Syndrome Association

Indian Prader-Willi Syndrome Association(IPWSA) is a non-profit trust founded & run by parents of PWS angels. Connect with us at [email protected]

[Indian Prader-Willi Syndrome Association @IPWSA_]

Other states to follow #Bengal diabetes model | #Kolkata News - The Times of India https://t.co/ugdyRtmE4f @timesofindia

[Indian Prader-Willi Syndrome Association @IPWSA_]

Heartfelt congratulations to @SuvenduWB @BJP4India @PMOIndia @pmo_office @AmitShahOffice @TVKVijayHQ
We sincerely urge for smooth implementation of National RareDisease Policy & UDID in #Chennai #Bengal
@MoHFW_INDIA @DpcABPMJAY @socialpwds @Office_of_CCPD
Rare lives matter🙏

[Indian Prader-Willi Syndrome Association @IPWSA_]

Research shows that a significant percentage of individuals with PWS display autism spectrum traits, such as:
• Social communication difficulties
• Repetitive behaviours
• Sensory sensitivities
• Rigidity in routines
• Anxiety and emotional regulation challenges
#Autism

[Indian Prader-Willi Syndrome Association @IPWSA_]

India has almost 70 million Rare Disease patients #RareLivesMatter Parents are already drowning with the financial burden of treatment and here our children are deprived of basic medical insurance even for common illness hospitalisations @irdaindia @raghav_chadha @healthtimeszim

[Indian Prader-Willi Syndrome Association @IPWSA_]

@raghav_chadha Sir,you are the voice of common people in India.On @rarediseaseday & awareness month,please support our community. Leave alone any medical help..In our country a basic medical insurance policy is also denied to our #Raredisease #warriors
@irdaindia

[PatientsEngage @PatientsEngage]

What is The Rare Disease Challenge?
Join us as @ap_mittal speaks to an extraordinary panel of #RareDisease patient advocates:
@Prasannashirol Cofounder @ORDIndia
Shikha Metharamani CoFounder @IPWSA_
Ms. Purva Mittal, Patient Advocate Spinal Muscular Atrophy
#LivedAndLeading

[Indian Prader-Willi Syndrome Association @IPWSA_]

Thank you Tata Institute of Genetic Sciences @TIGS
We couldn't have achieved this event so flawlessly without your support.

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

Recently we hosted a one day conference on Prader–Willi syndrome with @IPWSA_ at @BLiSC_India campus

Expert insights spanned sleep & pulmonology, endocrinology, psychology, education & genetics

Thank you to all participants for attending!

Read more: https://t.co/iTNhTmGQPr

[Indian Prader-Willi Syndrome Association @IPWSA_]

@TIGS_India @BLiSC_India Thank you for the kind support ,we are truly grateful for this event 🙏

[Indian Prader-Willi Syndrome Association @IPWSA_]

Our hero, Aryan got featured in @timesofindia for #RareDisease awareness month
@rarediseaseday
#PraderWilliSyndrome

[Indian Prader-Willi Syndrome Association @IPWSA_]

Inside India’s Funding Failure in Rare Genetic Disease Care | Global Health NOW https://t.co/wlpGGjFBrS
#MUMBAI -the most progressive metro city but the worst possible scenario for all our #PWS patients, awaiting treatment!
@KEMHOSPITAL
@RupsaChak @MoHFW_INDIA @healthtimeszim

[Indian Prader-Willi Syndrome Association @IPWSA_]

@MSDESkillIndia @jayantrld Sir @PMOIndia @airnewsalerts @NITIAayog @PIB_India
Thank you for talking about inclusivity for PwD🙏 Sir,please explain what is being implemented to bring about this change?

[Indian Prader-Willi Syndrome Association @IPWSA_]

Thank you to the Endo department at #IPGMER for their constant support and interest in #PWS #Kolkata #india

[Anish Kar @ANISHKAR11]

Would also like to bring to your notice this recent study from our institute #IPGMER led by recently graduated DM trainee Dr Pritam Biswas, looking at inflammatory markers as risk factors in children with #PWS, possibly the first of its kind from Eastern India published in JES.

[Anish Kar @ANISHKAR11]

As May Prader-Willi Syndrome Awareness Month winds down,its important to understand these children and adolescents growing into adulthood to provide effective care #PraderWilliSyndrome #raredisease

[Aster Hospitals, Bangalore @asterbangalore]

This May, we raise awareness for Prader-Willi Syndrome, a rare genetic disorder affecting hunger, growth, hormones & behaviour. Connect with our Pediatric Endo team to know more:
https://t.co/e0kbx14zmB
#PWSAwarenessMonth #RareDisease #HopeForPWS #AsterHospitals #DeptOfPedEndo

[Indian Prader-Willi Syndrome Association @IPWSA_]

@asterbangalore Thank you for spreading the much needed awareness on Prader Willi Sydrome🧡

[Indian Prader-Willi Syndrome Association @IPWSA_]

Soleno Therapeutics Announces U.S. FDA Approval of VYKAT™ XR to Treat Hyperphagia in Prader-Willi Syndrome – Soleno Therapeutics Inc. https://t.co/poEFrdE0zm

[Indian Prader-Willi Syndrome Association @IPWSA_]

#hope 🙏

[Prader-Willi Research @fpwr]

🧬Could genetic therapy change the future of PWS? Researchers are working to develop treatments that target the root causes of the condition, offering new hope for individuals with #PWS and their families. Learn more about the progress being made: https://t.co/pDRxk2VZMw

[Indian Prader-Willi Syndrome Association @IPWSA_]

@paulagnimitra1 "WHAT AFTER US ?"
A question every parent of a child with disability is haunted by every moment.The case of Ritam Maji is our nightmare come true and a reality check. Hope you deliver your promises to find him a home. @DisabilityIndia @abpanandatv @PTI_News

[Indian Prader-Willi Syndrome Association @IPWSA_]

@tv9gujarati @GujaratPolice @News18Guj @TimesNow @timesofindia @NayiDisha_ @CEOBihar @TelanganaHealth @MoHFW_INDIA @CMOGuj

[Indian Prader-Willi Syndrome Association @IPWSA_]

Nayum Pasha lost his life because of the blatant negligence and self absorption of #AutismAshram
Instead of the well being of the child,who was entrusted in their care by trusting parents.Many more victims are voicing out @DisabilityIndia @socialpwds @mansukhmandviya #Gujarat