Members-Only Webinar Archives - NORD (National Organization for Rare Disorders)

Recap: NIH NCATS Day – Partnering with Patients for Smarter Science at the NIH

Written by Lisa Sencen on August 23, 2017

In advance of today’s Members-Only Webinar with the Director of NIH NCATS, Dr. Christopher Austin, Swapna Kakani, a summer intern with NORD, wrote the article below highlighting her experience in June at the NIH NCATS Day – Partnering with Patients for Smarter Science. We look forward to… Read More

Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched

Written by Jennifer Huron on December 23, 2016

Research study is open to participants worldwide to advance understanding and treatments for rare disease causing non-syndromic intellectual disability ranging from mild to severe with attention deficits, impulsivity, and/or mood disorders. Seventy to eighty percent of children with SYNGAP1 also have some type of epilepsy and the SYNGAP1 gene has… Read More

Archives for: August 23rd, 2017

Recap: NIH NCATS Day – Partnering with Patients for Smarter Science at the NIH

Written by Lisa Sencen on August 23, 2017

Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched

Written by Jennifer Huron on December 23, 2016

Alone we are rare. Together we are strong.®