Written by Maia Craig on December 17, 2021
NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative.
The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of… Read More
Written by Maia Craig on December 6, 2021
Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.
What motivated you to start RCRF?
I am a rare cancer survivor, and I was diagnosed with… Read More
Written by Valaree DonFrancesco on November 18, 2021
Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that currently has no cure.
The new study, the Gorlin Syndrome Alliance Patient Registry (GSAPR), creates a platform for patients around the… Read More
Written by Rohan Narayanan on November 4, 2021
National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients
Washington, DC, November 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United States, establishing a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The program is being led by NORD to promote outstanding treatment for rare disease… Read More
Written by Rohan Narayanan on September 22, 2021
Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety of other health and developmental concerns.
Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More