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May. 21, 2015

TOPIC: Advocacy, Featured News, Press Releases

NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Posted by Jennifer Huron

NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and the introduction of the OPEN Act in the United States Senate.

NORD congratulates the House Energy and Commerce Committee for unanimously approving the 21st Century Cures initiative. As Chairman Fred Upton (R-MI) said, “This historic day marks a big bipartisan step toward our path to cures.” Today also marks the introduction in the Senate of the OPEN Act, a bill that aims to greater incentivize orphan product development.

We look forward to working with the House as it considers the bill approved today by the Committee, and with the Senate as it continues its Medical Innovation Initiative and considers the OPEN Act.

The bill approved today contains provisions that are critically important for the rare disease community. It also puts the patient at the center of drug approval, strengthens the FDA’s ability to streamline clinical trials, reauthorizes a critical program for rare pediatric disease drug development and further incentivizes development of orphan products. We hope the legislation, which includes sorely needed additional funding for the National Institutes of Health and the Food and Drug Administration, will foster an environment that is conducive to the development of new therapies and improve patients’ access to them.

On behalf of the rare disease community, NORD thanks the Committee for its months of collaboration, thoughtfulness and hard work. Today’s vote underscores the bipartisan commitment to move this legislation through the House, and we hope the same spirit of collaboration leads to prompt consideration by the Senate.

Peter L. Saltonstall

President and CEO, The National Organization for Rare Disorders (NORD)

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2 Responses to “NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative”

  1. Cathe LeBlanc Satterthwaite says:

    I am very impressed with your group and would love to do what I can. I suffer from a multitude of orphan/rare diseases. CRPS/RSD, Fibromyalgia, Dystonia, Myofascial syndrome, shoulder winging, buckling knee syndrome, vertigo, and gastrointestinal problems resulting from CRPS. I had a shoulder operation in 06 and from that day on my life changed from and physically active and owner and director of a major real estate corporation in Man hattan and London.

    Can you please contact me as I would like to get involved. I’m lucky to have excellent Drs. and have run seminars with guest speakers. My disease is debilitating and extremely painful and now need a cane and special brace for my knee. It is like sitting in a vat of burning oil, covered in ice with knives jabbing me inside my bones. The neuropathic problems of this disease (CRPS) affects internally as well as externally with out a cure, and we are looked at as drug seekers as most Drs don’t recognize the disease.

    Many thanks for your hard work and I would love to get involved.

    Cathe LeBlanc Satterthwaite