Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease Advisory Council. A few weeks after Assemblyman Ron Dancer introduced the bill, the Senate Health, Human Services and Senior Citizens Committee approved it. If it receives even further approval, those living with a rare condition will receive the care and treatment that they need.
About the Council
The politicians point out the need for this council, especially in regards to the ongoing pandemic. As COVID-19 has made it difficult to seek out and receive suitable care, especially for rare disease patients, this council stands to improve their lives. Beyond the virus, these patients already face issues with diagnosis, awareness, and treatment.
The council will include 30 members who will influence legislature, private agencies, government agencies, and other authorities on how to best provide care for rare disease patients. Politicians hope that their advice and input will decrease the number of hoops that these patients jump through to access the care that they need.
Rare Disease Advocacy in New Jersey
Many rare disease advocacy groups are celebrating the legislative success. One of which is the non-profit group Fighting H.A.R.D. (Having a Rare Disease), which was created by two sisters to give a voice and help those living with a rare condition on the Jersey Shore. Jonna and Allie started the non-profit after being diagnosed with multiple rare conditions and a failed search for a foundation that could support all of their needs.
Allie, who is now 18, has juvenile rheumatoid arthritis, Crohn’s disease, and anxiety, while Jonna, her 17-year-old sister, has gastroparesis and SMA syndrome. After creating their foundation, the sisters began to financially assist a number of families affected by rare disease in their area and sent out care packages to others. Additionally, they organize awareness events, fundraisers, and activity nights for the community.
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