Join a Parents’ Journey to Help their Child Fight SynGap1

After being married for eight years, my wife and I got the wonderful news that we’re expecting our first child. When our son was born in October 2015, we were...

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These Siblings Fight MPS Like Warriors

Entering the COERD Centre of ORDI at IGICH, I was welcomed by the young chirpy voices of Ritika and Jhanvi (name changed for patient privacy reasons). Listening to their conversation...

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Lalith’s story: Raising two children with Sanfilippo

Lalith is a father of two children with Sanfilippo syndrome. In this blog he shares his families story and his hopes for the future of research. Sanfilippo syndrome (MPS III)...

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This Gap In Our Healthcare System Prevents Me From Seeking Treatment For A Rare Disorder

Eight years ago, when I was 16, I was diagnosed with a rare neurological disorder. The condition is known as spinocerebellar ataxia (SCA), which is one among a group of...

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Bangalore PhD Student on Coming Out with Thalassemia

My name is Namitha from Bangalore. I want to share my story to empower and enable others to come out as well. I am now a PhD student working on...

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Upcoming Events
From 21-October-2019
to 22-October-2019

Rare Diseases and Orphan Products Breakthrough Summit October 21-22, 2019 in Washington, D.C.

Marriott Wardman Park
2660 Woodley Rd. NW
Washington, District of Columbia 20008
From 29-February-2020
to 21-June-2020

RaceFor7USA 2020

1) Washington DC
2) SF Bay area, CA
3) Greenville, SC
4) Boston (Acton), MA
5) Frisco, TX

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