In a show of bipartisan support for the rare disease community, members of the House and Senate have come together to form the first bicameral Rare Disease Congressional Caucus. The Caucus will be critical in raising awareness of the challenges faced by rare disease patients and serve as a platform for giving those individuals a voice in both the House and Senate. In addition, the Caucus will convene briefings throughout the year to educate Congressional staff on topics of importance to the rare disease community. The Caucus will be co-chaired by Representatives Lance (R-NJ) and Crowley (D-NY)  and Senators Hatch (R-UT) and Klobuchar (D-MN).

“Throughout my time in the Senate, I have worked hard to help the 30 million Americans with rare diseases,” Sen. Hatch said. “While we have previously taken important steps, like passing the Orphan Drug Act, the fact that 95 percent of rare diseases currently have no treatment shows that much more needs to be done. Senator Klobuchar has been a terrific partner on legislation to get vital treatments to patients in need, and I am honored to join her as Senate Co-Chairs of the Rare Disease Congressional Caucus.”

“While there are about 7,000 known rare diseases, there are fewer than 500 drugs approved to treat any of those conditions,” Sen. Klobuchar said. “It is critical that we work together to increase the number of safe, effective, and affordable treatments that are available for people with rare diseases. I have long worked with Senator Hatch on this issue and I look forward to continuing this work as a Senate Co-Chair of the Rare Disease Congressional Caucus.”

The Rare Disease Congressional Caucus, originally formed in 2009 by Rep. Upton (R-MI), is currently comprised of 88 Members of the House and will be expanded to include the Senate. “We are grateful to our House champions and to Senators Hatch and Klobuchar for stepping-up to lead this Caucus on behalf of the rare disease community. We are looking forward to raising awareness about the importance of public policy to spur the development of new therapies for rare disease patients,” said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.

Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will continue to coordinate regular Hill briefings and act as a legislative clearinghouse for the patient community, with the goal of mobilizing patients to be effective legislative advocates (www.rareadvocates.org). – See more here.

1 thought on “EveryLife Foundation for Rare Diseases Announces Formation of Bicameral Rare Disease Congressional Caucus”

  1. Samar says:

    Hello miss jacqueline’s my daughter has a raredisease i live in jordan and we look for treatment for her and diagnose condition .
    In my country the doctors don’t know about her condition i has all her medical reports i can sent it for you can you help me please
    Sent from my iPhone

    Sent from my iPhone

    My name is samar i am sara’s mother sara has arare desease when she borned and now she is 15 years old we live in amman jordan her desease called (syndrom of chromosome 8) when she was 12years old she made a surgery in chine because of corruption in chine in her back the basic reason for this surgery that this rare desease ingeneral effect on bones uttar parties fingers and toes all this symptoms effectin the tall of her leg we noticed that if she exosed to any desease or viruses if it difficult or simple such as inflammatary bowel or the acne she see the doctor and take the medicine but unfountunatly she doesnt heal be well quickly (slow healing) on the other hand the imortant thing that we noticed that many of fatty lumps gathered around her eyelids and utter parties of her hand and her fingers and toes dont expand as a normal person .
    About her character she tends to be alone she like isolation and she isn’t active she is very laziness she prefer sleeping than make any activities . Before i wrote to you i try many times to find a therapy for her disease in my country but they confirm that is no therapy in the middle east i wish to help us to find a solution and therapy for my daughter because this rare disease is a big problem for her its make for her deformation of bones ihope to help me from your country which is a development place in medicine and it has avery high experience in this subject . Thank you for your intention .

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