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Jun. 29, 2017

TOPIC: Advocacy, Get Involved

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted by Christina Jensen

Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government, passed in the Senate. Director of State Policy at the National Organization for Rare Disorders (NORD), Tim Boyd, said, “With the passage of HB 239, rare disease patients and families in Pennsylvania now have a stronger voice in their government. NORD is incredibly grateful for the hard work of the Pennsylvania Rare Action Network and the steadfast commitment to the rare disease community by Rep. Marcy Toepel and the rest of the PA Rare Disease Caucus.” See NORD’s statement on the House passage below.


PITTSBURGH, Penn., May 10, 2017—Today, Pennsylvania’s House of Representatives voted unanimously to pass HB 239, which would establish a Rare Disease Advisory Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government.  The bill now moves on to the Senate for consideration.

“Helping the rare disease community starts with ensuring that patients and families have a voice in government,” says Tim Boyd, director of state policy at the National Organization for Rare Disorders (NORD), which has worked on the bill.  “Rare Disease Advisory Councils serve to evaluate and make recommendations to the state on issues related to health care access and coverage for rare disease patients.  Rep. Toepel, who sponsored HB 239 and spearheaded its passage, is a great champion for rare disease families in Pennsylvania. NORD and our statewide advocates now urge the Senate to move swiftly to pass the bill and send it to the Governor.”

Once signed by the governor, Pennsylvania would become the sixth state to establish a Rare Disease Advisory Council, according to Boyd.  Rare advocates and the Pennsylvania chapter of NORD’s Rare Action Network have worked with the Pennsylvania state government to advance this crucial piece of legislation to this point.

There are 7,000 rare diseases that affect 200,000 or fewer Americans. The majority still have no treatment.

For more than 30 years, NORD, a 501(c)(3) independent, nonpartisan charity, has been the nation’s voice on rare diseases and at the forefront of patient advocacy. NORD’s Rare Action Network is the nation’s leading rare disease advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. The goal of RAN is to ensure that the rare disease community is represented and supported in all 50 states and to advocate for changes that better patients.

To join the Rare Action Network and to learn how to get involved in your state, visit rareaction.org.

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About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.

Media Contact:
Lisa Phelps
(203) 702-2872
lphelps@rarediseases.org

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