In 2015, rare disease stakeholders in North Carolina established the first Rare Disease Advisory Council (RDAC); the National Organization for Rare Disorders (NORD) explains that an RDAC is an advisory body that provides the rare disease community with a stronger voice in state government. Since North Carolina’s RDAC establishment, over 20 other states have established RDACs and four states have even signed RDAC legislation into law.
Improving the Lives of Delaware Citizens with a Rare Disease
According to a news release from Delaware’s Lt. Governor Bethany Hall-Long, Delaware may have just become the next state to establish a RDAC with the passage of Senate Bill 55 (DE SB55). LegiScan explains that:
This bill establishes the Delaware Rare Disease Advisory Council which, among other things, is intended to educate medical professionals, government agencies, legislators, and the public about [the 7,000 known] rare diseases [that] create major public health challenges. The Advisory Council is charged with engaging in activities intended to benefit rare disease patients in Delaware, including encouraging and securing funding for the development of new treatments for rare diseases.
DE SB55 was sponsored by Senator Nicole Poore and Representative Krista Griffith. Although the Delaware session is in recess, the bill passed the Senate on June 8, 2023 and the House on June 20, 2023. The votes for the bill in both the House and Senate seemed to be a resounding yes; nobody voted against the bill at all.
Establishing a RDAC in Delaware will be hugely impactful for its residents. On the Council will sit various stakeholders from elected officials and medical researchers to doctors, patients, and families. Given that patients are experts on their conditions, it is extremely important to ensure that their voices are included and heard in matters pertaining to the community. Offering this voice also lets those affected by rare diseases explain what they need.
Right now, a majority of rare diseases do not have effective treatment options. Many patients also face medical gaslighting and a lack of awareness around their condition. This can be frustrating, isolating, and harmful to their health. Implementing a Rare Disease Advisory Council in Delaware will allow residents to improve access, fight barriers to care, and gain access to better diagnostic and care services.
