According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that it is hosting on December 16, 2020. This initiative is called Project RDAC. The goal is the establishment of a Rare Disease Advisory Council (RDAC) for every state in the US. But what role would the RDAC play?
About Rare Disease Advisory Councils
In truth, RDACs are not an entirely new concept; in fact, 14 states have established RDACs so far. The first one was in North Carolina, which first established its RDAC in 2015. Momentum for these councils has continued to build ever since. In fact, the governors of eight states have signed legislation establishing an RDAC since last year. These councils are intended to provide a platform for various stakeholders to make well-informed recommendations on state policy related to rare diseases. Examples include initiatives to facilitate spreading rare disease awareness, improving treatment access and affordability, and enhancing access to diagnostic tools.
NORD believes that a strong, well organized RDAC can encourage a state’s government and rare disease community to collaborate in a productive manner and address critical treatment barriers. Project RDAC would encourage existing councils to communicate with one another to talk strategy, encourage other states to establish their own councils, and also provide guidance to new ones as the are formed.
About The Meeting
The December 16 meeting is open to lawmakers, patient advocacy groups, patients, industry reps, caregivers, doctors, and other stakeholders. This will be the first time that Project RDAC will be publicly discussed. If you are interested in signing up, click here. The meeting will also feature speakers that are currently working on establishing a council as well as current members of RDACs.
90 percent of rare diseases still lack an FDA approved treatment. The healthcare system is not attuned to meet the needs of rare disease patients, who often face difficulties with extreme costs, delayed or inaccurate diagnoses, and major limitations when it comes to treatment. It is essential that input from the rare disease community is involved in the development of future legislation.
For more information about the project, click here.
