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August 17, 2015

TOPIC: Featured News

Member Spotlight: FIRST

Posted by Lisa Sencen

The Foundation for Ichthyosis & Related Skin Types (FIRST) is a voluntary organization dedicated to helping individuals and families affected by the inherited skin diseases collectively called the ichthyoses. The ichthyoses are a group of rare, inherited disorders characterized by abnormally dry, scaly, thickened skin due to abnormalities in the production of the protein keratin. FIRST provides support, information,… Read More

August 14, 2015

TOPIC: Advocacy

Advocating for Rare Disease Patients at the NIH

Posted by Jennifer Huron

NIH Master LogoNORD was glad to have the opportunity to submit comments to the National Institutes of Health (NIH) for its Strategic Plan, where we talked about the importance of programs for rare diseases, especially those for undiagnosed patients that have the potential to solve the medical mysteries that… Read More

August 12, 2015

TOPIC: Featured News

New NORD PSA

Posted by Jennifer Huron

Sean Hepburn Ferrer, son of actress Audrey Hepburn, is calling for more awareness of rare diseases in a new PSA with the National Organization for Rare Disorders (NORD).

Audrey Hepburn died of a rare form of cancer and it was the way she lived her life, demonstrating that every life matters, which inspired Ferrer to join NORD as an advocate… Read More

August 10, 2015

TOPIC: Uncategorized

Member Spotlight: Cure SMA

Posted by Lisa Sencen

Cure SMA is a voluntary-driven, non-profit organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA.

1.) What does it mean to you personally to be a patient organization serving the rare community?

Spinal muscular atrophy is the number one genetic cause… Read More