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Sharing News from NORD Member Organizations

Guest post by NORD
Published Online: Tuesday, Aug 25, 2015
NORD is pleased to be collaborating with Rare Disease Communications, and we are particularly happy about the opportunity this Voice of the Community column will provide to share information from our member organizations. NORD membership is comprised of a diverse array of rare disease patient organizations that have met standards for excellence established by the NORD board of directors.

Currently, we have more than 230 members who together represent hundreds of diseases. Our members and their medical advisors partner with NORD to provide advocacy, awareness and education on behalf of the entire rare disease community. In addition, 84% of NORD’s members are actively involved in research and 79% are actively funding research.

We look forward to providing up-to-the-minute information about important advances, events and resources in this Voice of the Community column, and we would welcome questions or suggestions submitted through the Rare Disease Report editors at any time.  

Latest Articles
The FDA Advisory Committee voted 10-to-3 in favor of approving Endari (L-glutamine) for sickle cell disease.
Nabila Bouatia-Naji, PhD of INSERM talks about the genetics of fibromuscular dysplasia (FMD) and the studies she is involved with to better understand this rare condition.
The small girl who got pulled into the harbor by a sea lion this week may have seal finger, a rare infection resulting from the encounter.
A new study by Hughes et al indicates long-term use of Vimizim (elosulfase afla) in adults with Morquio A is effective and provides those patients with increased strength and endurance to tackle their daily activities.
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