On May 19th, the National Organization of Rare Disorders (NORD) will honor several people and organizations that have made significant contributions in the rare disease community in the past year. One of NORD's Portrait of Courage recipients this year is Lori Sames, executive director of Hannah's Hope Fund, a non-profit organization that is providing opportunities and funding to develop therapies - including gene therapy - for giant axonal neuropathy.
Other Portraits of Courage Honorees include:
Devin Alvarez (Sprengel’s Deformity) Emily Argersinger (Sturge-Weber Syndrome) Laura Crandall (Sudden Unexplained Death in Childhood) Anthony Ferrandino (Batten Disease) Bailey Gribben (Neurofibromatosis) Sophia Hanson (Lymphedema Praecox) Savannah Hollis (Cavernous Angioma) Glenn and Cara O’Neill (Sanfilippo Syndrome) Yusuf Patel (Methyl Melonic Acidemia) Lori Sames (Giant Axonal Neuropathy)
Rare Disease Report is proud to be media partners with NORD for this upcoming gala that will recognize the significant accomplishment so many people and organizations are making to improve awareness and management of rare diseases.