7 US States Launch RDAC Advocacy Groups With NORD Support

Seven new U.S. states have launched a Rare Disease Advisory Council, or RDAC, in the last year with the support of the National Organization for Rare Disorders (NORD), an advocacy group for the millions of Americans living with rare diseases, to include Lambert-Eaton myasthenic syndrome (LEMS).

It is estimated that there are more than 7,000 rare diseases affecting more than 25 million Americans. In 2015, a group of patients, caregivers, families, and providers in North Carolina created the first RDAC to raise awareness and advocate for better policies in that state for people affected by these disorders.

This year sees Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina, and Virginia added to the list of states with RDACs.

NORD, itself launched in a grassroots effort in the early 1980s, launched its Project RDAC at the end of last year to help more states create functional advisory councils. These councils provide a way for the rare disease community to have a stronger voice in state government, and to present the needs and challenges of patients and their families and caregivers to legislators and those with policy-making capabilities.

“The first year of Project RDAC directly led to the creation of seven new RDACs across the country, which is an impressive reflection of the strength of the rare disease community and the interest and engagement of volunteers, state decision makers, patients and families,” Peter Saltonstall, CEO and president of NORD, said in a press release.

Since its creation, Project RDAC has facilitated 57 RDAC coalition meetings and engaged with 201 patient organizations.

Additionally, the project has contacted 254 legislators, calling on them to take action, and submitted 114 different testimonies and letters of support. Those efforts led to the introduction of 11 RDAC bills — and helped in signing these seven new RDACs into law this year.

Advocates in 21 states have so far established RDACs, and those supporting the rare disease community have sought to launch councils in several other states.

According to NORD, RDACs are showing great promise in each of the states in which they were created, specifically in addressing barriers that prevent patients with rare diseases from getting proper treatment and care.

However, many RDACs are still in the early stages of their development and just becoming operational, according to NORD.

To support these councils, NORD is working to beef up collaboration between RDACs, create educational resources, and help states to pass laws to create RDACs that can function at the highest levels. All of these efforts will help ensure that the needs of rare disease communities are being met, advocates say.