One of NORD’s (National Organization for Rare Disorders) goals is to assure that there is a Rare Disease Advisory Council (RDAC) represented at every State. Currently there are about 12 RDAC’s Nationwide. One of the NW Rare Disease Coalition Programs would be a WA RDAC. NORD advices and supports these initiatives, they don’t lead any of the RDAC’s. RDAC’s are associated with an act of legislation (a Bill). The purpose of an RDAC is to report and educate legislators.
Born a Hero has been working on establishing the WA RDAC since 2019. We have been working on interacting with other RDAC leaders to understand what they have done, and what has and hasn’t worked for them. We have read several RDAC reports and have, have been working on establishing ties with several legislators, and are proud to have identified legislative champions for our efforts with the WA RDAC. It has been exciting to build the team for this coalition. We have worked hard to gather a diverse representation of stakeholders involved in rare disease research. It includes world famous gene therapy experts and recognized scientists from University of Washington, and Seattle Children’s Hospital. Recently we have built a strong connection with the WA Department of Health and their Newborn Screening Team and Life Science Washington. From all our findings we have created a report of the needs we know exist and project ideas for the future.
We have decided to do things pretty uniquely compared to other RDAC’s. To star, the WA RDAC is just one program under the umbrella of the bigger NW Rare Disease Coalition. The Coalition will be a 501 (c)(3). Why a 501 (c)(3)? Because we have learned that having a WA RDAC living under an Institution, Trade Organization, or the Department of Health would bring us great credibility, but it has proven to make it challenging to get things done. Having the WA RDAC living under a Coalition, that is also a 501(c)(3) is really unique to us, but we believe it will be more efficient. Some of the programs we have talked about including in the NW Rare Disease Coalition are; WA RDAC, RDII, Seattle Rare Disease Fair, Education and Awareness, Newborn Screening, and Mental Health. Why a did we decide to build the Coalition? Because the process for most of these programs is lengthy, this keeps us moving forward with something all the time.
What are some of the initial things we want to accomplish with the Rare Disease Coalition; 1. Landscape Analysis (We really want to understand the needs of our community), 2. Understand the gaps and processes in our State. 3. Incidence and Prevalence of rare diseases in WA State, 3. Add new rare diseases to the Newborn Screening Panel (we really lack this in the State of WA.) 4. Education and awareness, and 5. Centralizing data
More Information and NW Rare Disease Coalition- Coming Soon