As a founding member of the World Leukodystrophy Alliance, we continue to collaborate with 14 other leukodystrophy organizations in order to leverage our resources to improve the quality of life for leukodystrophies patients by raising awareness and funding research projects. We have been participating in the Child Neurology Conference for the last two years in order to educate medical and research professionals about the leukodystrophies.
We are proud participants of Rare Disease Day, an international day of action which aims to raise awareness of rare diseases by targeting the general public, policy makers, public authorities, industry representatives, researchers, and health professionals. The political momentum resulting from Rare Disease Day also serves advocacy purposes. For this year’s Rare Disease Day on February 29th, 2016, The Myelin Project was at the State Capitol building in Sacramento, California with other rare disease advocates, state legislators, industry representatives, and the media.
Janis Sherwood, our newest board member, has been traveling throughout the United States in a retrofitted RV raising awareness of ALD in order to help others avoid the same fate as her son Sawyer, who passed away from the disease after several misdiagnoses. To learn more about Janis, click here.
We are now members of The National Organization for Rare Disorders (NORD), the official Sponsor of Rare Disease Day in the United States. Our goal is to increase the exposure of ALD, and to coordinate with other rare disease organizations to advocate for legislation and raise awareness of all rare diseases. For more than 30 years, NORD has been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments.