Delaware establishes Rare Disease Advisory Council to help patients
Project RDAC hopes for councils in all 50 US states; this is 27th
Delaware has become the 27th state in the U.S. to establish a Rare Disease Advisory Council (RDAC) to empower and equip rare disease community members to engage state leaders in issues important to patients and their families.
This latest RDAC — established by passage of Senate Bill 55 (SB 55) with Amendment SA 1 — furthers the goal of Project RDAC, an initiative by the National Organization for Rare Disorders (NORD), to create such a council in every state.
The first advisory council was formed in North Carolina in 2015, and Delaware follows Maryland and Indiana in their creation of RDACs earlier this year.
As with those in each state with an RDAC, Delaware stakeholders can use the council to educate and make recommendations to state lawmakers on several relevant matters. These may include access to diagnostic tools, the need for heightened awareness of rare disorders — such as aromatic l-amino acid decarboxylase (AADC) deficiency — and the need for accessible and affordable therapies.
Patients, legislators, advocates celebrate new advisory council
“Delawareans living with rare diseases face challenges that should never be experienced — struggles with diagnosis, treatment, and everyday life,” Bethany Hall-Long, PhD, who serves as the state’s lieutenant governor, said in a NORD press release.
“This council, brought to life by SB 55, will give patients, caregivers, and families a seat at the table to address concerns and support a foundation for further innovation to create treatments and improve services,” added Hall-Long, who led efforts in the state to get this legislation introduced.
The bill’s lead House sponsor was Rep. Krista Griffith, who said she’s “looking forward to hearing about the positive impacts this council will have for so many residents.”
“I’m hopeful that the work of this Advisory Council will give Delawareans greater access to specialists who can provide diagnoses and treatment; affordable access to therapies; and medication to treat rare diseases,” Griffith said.
In addition to state policymakers, Delaware’s advisory council will be comprised of patients, caregivers, scientists, and healthcare providers.
Jan Meyer, a Delaware resident who lives with a rare disease, said she was “so excited” that her state took on this challenge.
“This will open doors to increased advocacy, new and improved treatment options, and funding research for these diseases that are often overlooked,” Meyer said, adding, “The forming of the RDAC ultimately equals more hope for those of us within the rare disease community and we all need hope.”
There are more than 7,000 known rare diseases that affect more than 25 million Americans. Some 90% lack a federally approved treatment.
It can be difficult for rare disease community members, such as those living or caring for someone with AADC deficiency, to find information about care and treatment, and existing resources may be limited. Because patients are scattered across the U.S., there is a hodgepodge of challenges and possible solutions.
This council, brought to life by SB 55, will give patients, caregivers, and families a seat at the table to address concerns and support a foundation for further innovation to create treatments and improve services.
“An estimated one in ten Americans is living with a rare disease, but many patients struggle to find knowledgeable health care providers with relevant expertise and access to necessary care and treatment for their complex condition,” said Heidi Ross, NORD’s vice president of policy and regulatory affairs.
Through RDACs such as the one now established in Delaware, advocates in each state can collaborate to address impediments to appropriate care.
“NORD is thrilled to see Delaware join the growing number of states looking to support their rare disease community by establishing a Rare Disease Advisory Council,” Ross said.
A nonprofit patient advocacy organization for individuals with rare diseases, NORD publishes an annual State Report Card that tracks the establishment of RDACs nationwide.
“I’m grateful to everyone who worked to advocate for and pass this bill, and I’m looking forward to hearing about the positive impacts this council will have for so many residents,” Griffith said.