Nearly a few weeks after Ocean County Assemblyman Ron Dancer (R) introduced a bill to form a New Jersey Rare Disease Advisory Council, it became a reality and New Jersey Senate Republican Leader Tom Kean is now taking the baton with the intent on finishing the race to help those battling a rare disease, further putting this topic on the forefront.

Senator Kean's legislation, (S-2682) was approved Tuesday by the Senate Health, Human Services and Senior Citizens Committee and would, upon further approval, ensure that anyone suffering from unusual conditions receive suitable care by establishing the New Jersey Rare Disease Advisory Council.

“The ongoing pandemic makes it more vital than ever to help those who are impacted by rare illnesses that are often difficult to diagnose and treat,” Senator Kean (R-21) said in a statement. “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. This makes them especially vulnerable to COVID and its life-threatening effects.”

Senator Kean adds that rare diseases are "difficult to identify and often misdiagnosed, resulting in lengthy delays of appropriate treatment with the lack of medical specialists, medications and other therapies for these orphaned syndromes", which complicates matters.

“It has always been difficult for patients to find a satisfactory medical determination and effective remedies, and with COVID, the stakes are much higher now,” Senator Kean said. “The creation of this advisory council will help improve communication, awareness and treatment. I am pleased the Legislature is moving on this measure in both houses.”

The New Jersey Rare Disease Advisory Council is designed to include 30 members for the purpose of advising the Legislature, State departments, agencies, commissions and authorities, and private agencies providing services for persons diagnosed with a rare disease.

Assemblyman Dancer expressed the importance last month of establishing a rare disease advisory council to examine the issues facing those diagnosed with a rare disease through a comprehensive study and help the state government better understand the barriers faced by the community and better serve patients.

“Someone who is diagnosed with a rare disease shouldn’t have to jump through hoops to receive proper medical treatment,” Dancer said in a statement. “With the creation of an 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.”

Dancer said the Covid-19 coronavirus pandemic has also added a reason to pass this bill.

"Given the detrimental impact the coronavirus pandemic is having, the council may be the most qualified to research its effects on people with rare diseases and potentially highlight much needed solutions. The coronavirus pandemic has shined a light on the need to conduct a thorough study of current treatment plans and legislative policies that affect the treatment of rare diseases,” Dancer said. “This council would help state departments and agencies assist those affected by a rare disease with critical and possibly life-saving information.”

Having a rare disease can come with expensive medical bills or families diverting money to pay those bills and trying to figure out how to pay for other necessities.

Allie and Jonna are Howell High School students and sisters who began the non-profit Fighting H.A.R.D (Having A Rare Disease) to help children with rare diseases and chronic illnesses at the Jersey Shore.

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The Fighting H.A.R.D. Foundation came to be after Allie (now 18-years old) became ill earlier in her youth with Crohn’s Disease, Juvenile Rheumatoid Arthritis and Anxiety.

It was then that one of her doctors instructed her to find a foundation that could provide the all around support she needed.

While there are some organizations who provide assistance to children with certain rare diseases, the Crocker's couldn't find one that supported all rare diseases.

That's when 'The Fighting H.A.R.D. Foundation' was born at a time when just Allie was sick but it would soon be something her younger sister Jonna (now 17-years old) needed just as much.

Jonna became ill with gastroparesis and SMA Syndrome.

As they continue to impact the lives of many Jersey Shore families and those beyond, they  send out care packages to those suffering with a rare disease "to let them know they're not alone" and they help financially assist more than two-dozen families in Monmouth and Ocean Counties.

The financial assistance comes in great need for families who are not getting as much coverage from their insurance company.

They also hold fundraisers, awareness day and plan activity nights for those in the rare disease community and beyond.

Well, flash forward to now and it looks like help for Allie and Jonna and many others like them could soon see financial and medical assistance.

Previous Townsquare Media Monmouth-Ocean reporting was used in this report.

You can follow Vin Ebenau on Twitter and Instagram and email news tips to vin.ebenau@townsquaremedia.com.

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