Toepel Receives Rare Impact Award from the National Organization for Rare Disorders
5/22/2018
On May 17, Rep. Marcy Toepel (R- Montgomery) was honored by the National Organization for Rare Disorders with its Rare Impact Award at its 35th Anniversary Celebration, which was held to recognize the people, organizations and innovators of the rare disease community.
WASHINGTON, D.C. – The National Organization for Rare Disorders (NORD) has recognized Rep. Marcy Toepel (R- Montgomery) as one of six individuals in the United States of the Rare Impact Award for her work to create a Rare Disease Advisory Council in the Commonwealth.

Last July, Toepel’s legislation that requires a council to be created to study rare diseases to provide information to patients, caregivers and other health care advocates was signed into law.

Within two years, the council must provide its first biennial comprehensive report regarding issues relating to management, monitoring and surveillance; education; detection; diagnosis; and information and care regarding rare diseases in the Commonwealth, including the quality and cost effectiveness of care, access to treatment and other relevant services for individuals affected by rare diseases. All reports will be made available to the public.

“Through a conversation with Joe Coyne, resident of the 147th District, I learned how scarce information is about rare diseases, as research was focused instead on common diseases. He told me about the many challenges that came with his son’s Batten Disease diagnosis, which led me to meet with stakeholder groups and then begin drafting the bill,” Toepel said.

In her acceptance speech, Toepel thanked the Coyne family for bringing the issue to her. She shared the award with them – and particularly son Garrett the Grand, Batten fighter, as he is affectionately called – as they are the reason for her involvement.

According to the National Institutes of Health, nearly 30 million Americans – and one in 10 Pennsylvanians – have rare diseases. A disease is considered rare if it affects fewer than 200,000 Americans. There are nearly 7,000 such diseases, and they tend to be serious and/or lifelong, and approximately two-thirds of those affected are children.

“Working with NORD has been a tremendous benefit during the process of creating the council, and without its help, Pennsylvania may not have been the sixth state in the nation to implement a Rare Disease Advisory Council,” Toepel added. “I thank this important group both for its dedication to helping Americans facing uncommon medical problems, as well as for recognizing me with this award.”

Representative Marcy Toepel
147th District
Pennsylvania House of Representatives

Media Contact: Alison Evans
717.260.6206
aevans@pahousegop.com
RepToepel.com / Facebook.com/RepToepel

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