Help has arrived as New Jersey now has Rare Disease Advisory Council
For those with a rare disease or know someone battling through a rare disease, what just happened at the Statehouse in Trenton is the equivalent of winning a playoff game.
The conversation about those with a rare disease is going from under-discussed in society to more properly discussed but it can't and shouldn't end here.
Among those making a push over the last few years for more attention, education, awareness and funding to be brought to the rare disease community have been Allie and Jonna Crocker of Howell, sisters battling their own rare diseases and not only being each others ally but being a beacon of hope for those going through what they go through across Ocean and Monmouth Counties.
Their 'Fighting H.A.R.D.' Foundation has helped bring an under discussed topic into the forefront as the community of those battling rare disease and their families and friends have been able to receive emotional, financial and community support.
The future is bright for the Crocker sisters and their mission to help others.
On Wednesday June 30, a new chapter began for them and for all those who battle a rare disease in New Jersey.
State Senate Republican Leader, Senator Tom Kean, as well as Ocean County Assemblyman Ron Dancer (R), both issued statements announcing that legislation which would establish the 'New Jersey Rare Disease Advisory Council', has been signed into law and will become a reality.
The 20-person council created by the legislation, (S-2682), will help anyone who has any of the more than 7,000 relatively unknown and difficult to diagnose rare diseases, Senator Kean explained.
“These rare orphan diseases can be difficult to diagnose and harder to treat,” Kean (R-21) said in a statement. “This law will provide desperately needed help for New Jersey residents living with rare illnesses. Genetic mutations are responsible for causing many of these ailments that can be passed down through generations, often resulting in suppressed immune systems or respiratory problems for patients."
The council will bring their findings and advisements to the attention of the State Legislature, State Departments, agencies, commissions and other authorities and private agencies, Kean explained, and help in the effort of ensuring that rare diseases are properly diagnosed and help with trying to provide more medial specialists to help those in the rare disease community.
“It has always been difficult for patients to find a satisfactory medical determination and effective remedies,” Kean said. “The creation of this advisory council will help improve communication, awareness and treatment. I appreciate the overwhelming support of my colleagues in the Legislature and am thankful the Governor endorsed this important measure.”
Assemblyman Ron Dancer sees this law as something that can help the state government have a better understanding of what people battling a rare disease go through and what their needs are on a daily and yearly basis.
“I am pleased the governor saw fit to support this measure. Those diagnosed with a rare disease shouldn’t have to jump through hoops to receive proper medical treatment or a diagnosis,” Dancer said in a statement. “With the creation of this advisory council, we will develop policy recommendations and best practices to share with state decision-makers that can improve the lives of those in the rare disease community.”
It's a step in the right direction to help those with and those watching a loved one battle a rare disease.
The education and awareness are among the things that need to continue and you can help spread the message.