It is with great excitement we announce that we are now members of the National Organization for Rare Disorders (NORD). 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.
NORD is a United States based 501(c)3 tax exempt non-profit organization aiming to provide support to individuals with rare diseases by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups.
Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments. NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.
The organization grew out of an “informal coalition” of support groups and families called together in the late 1970s to advocate legislation supporting development of orphan drugs, or drugs for treating rare diseases. They succeeded in getting the United States Congress to pass the Orphan Drug Act (ODA) in early 1983.
NORD is the official Sponsor of Rare Disease Day in the United States, 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.