Tag Archives: rare

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Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.

Click here to take action: Stand up for Rare Disease Patients TODAY

Please share this alert widely and join this event on Facebook.

Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.

The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
·         Bring hundreds of treatments to rare disease patients
·         Enable access to safe, effective and affordable treatments
·         Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs

Learn more at: http://curetheprocess.org/ incentivize/

 

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I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/

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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.

_MG_9125                  _MG_9296

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.