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Those Battling A Rare Disease Could Soon Get Big Healthcare Boost

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.” ....

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OC Assemblyman's bill would help those with a rare disease

Disease) to help children with rare diseases and chronic illnesses at the Jersey Shore.
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. ....

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