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Rare Disease Day (RDD) is a unique global advocacy effort to bring recognition of rare diseases as an international health challenge.

On March 2, 2015, rare disease patients, caregivers and advocates, rare disease organization, legislators, and industry representatives gathered at the California State Capitol. Will Zrnchik, IPPF CEO, welcomed the crowd and introduced Peter Saltonstall, President and CEO of the National Organization for Rare Disorders. Peter said, “NORD has been working … to find a therapy, make sure the pathways are clear, and to make sure that the incentives are there for industry to want to develop drugs for small populations.” California Assembly Member Katcho Achadjian (D-36) co-sponsored CA House Resolution 6 recognizing February 28, 2015 as Rare Disease Day in California.

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Inside the Capitol, Andrea Vergne, rare disease caregiver and advocate, told her grandson’s story living with a rare disease. Gary Sherwood, Communication Directors at the National Alopecia Areata Foundation, inspired attendees to become self-advocates and work with their elected officials. Adding to the advocacy theme, Eve Bukowski, California Healthcare Institute, echoed the need for patients to self-advocate. A special guest, California State Senator Dr. Richard Pan discussed the importance of rare disease advocacy and research.

Meanwhile, Marc Yale, IPPF Senior Peer Health Coach, and Kate Frantz, Awareness Program Manager, celebrated RDD events in Washington, DC. Marc attended NORD’s special preview of the new documentary “Banner on the Moon.” Patients, caregivers, advocacy groups and patient organizations saw Cindy Abbott’s inspiring. Cindy carries a NORD banner with her on several adventures to spread rare disease awareness. These included challenging herself to climb Mount Everest and participating in the 1,000-mile Alaskan Iditarod. Cindy’s perseverance and commitment to live life to the fullest were very inspiring.

Kate and Marc attended the American Medical Student Association’s Annual Convention. Two P/P patients, Liz Starrels and Mimi Levich, shared their P/P stories. Many students had never heard of P/P, or only briefly remembered it from their textbooks. This was a wonderful opportunity to spread awareness and encourage medical students to “Put P/P on their Radar!”

RDD 2                           RDD

Marc represented the P/P community at the Rare Disease Legislative Advocates (RDLA) conference.  There was an overview of the 21st Century Cures Initiative (http://energycommerce.house.gov/cures), which many believe is the rare disease community’s greatest hope for new and emerging treatments.

Marc also met with several Congressional Members and legislative health experts encouraging their support of the Orphan Product Extensions Now Accelerating Cures and Treatment Act of 2015, H.R. 971. This legislation would re-purpose existing drugs for rare diseases allowing patients greater access to vital treatments.

Marc RDD                                        Marc RDD 2

Marc attended a symposium celebrating rare diseases research efforts across NIH, the Federal Government and the entire advocacy community.

There are over 7,000 rare diseases. 1 in 10 Americans are affected and 95% of these diseases have no approved treatment. Rare Disease Week and Rare Disease Day is an opportunity for the Pemphigus and Pemphigoid community to be heard by advocating for yourself and others.

If you have questions about current legislation or would like information on how you can become involved, please contact marc@pemphigus.org.

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On September 9, 2014, members of the IPPF traveled to Capitol Hill in Washington D.C. to talk to their local congress members about legislation affecting the pemphigus and pemphigoid community.

Senior Peer Health Coach Marc Yale, and Patient Services Coordinator Noelle Madsen spoke with six California members of the House of Representatives, and Senators Barbara Boxer and Diane Feinstein.  Marc and Noelle sought support for the Medicare Advantage Participant Bill of Rights of 2014 (H.R. 4998/S. 2552).

Medicare Advantage Plans are removing dermatologists (and other specialty physicians) from their networks. This gives insurance companies to ability to eliminate doctors who prescribe vital, but expensive treatments to pemphigus and pemphigoid patients.  As a patient or caregiver, you already know how difficult it can be to find a doctor that can treat P/P.  Imagine having that physician removed from your insurance. This would be extremely harmful to a patient’s current quality of care.

Marc and Noelle also discussed the Patients Access to Treatments Act of 2013 (H.R. 460).  This bill would increase National Institutes of Health (NIH) funding by $1.3 billion.  The more funding the NIH gets, the more research can be done for rare diseases like pemphigus and pemphigoid.  This bill would also prevent insurance companies from increasing “tier four” treatment costs.  Many pemphigus and pemphigoid treatments are considered tier four, and increased costs to these treatments could negatively affect quality of care.

The IPPF feels these pieces of legislation are extremely important to the pemphigus and pemphigoid community. We urge you to contact your representatives and senators to ask for their support of these bills.

If you have questions about these, or other legislative affairs, please contact the IPPF at advocacy@pemphigus.org, or call Noelle Madsen at 855-4PEMPHIGUS extension 105.

Sample Advocacy Letters 49.97 KB 413 downloads

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