Rare Disease Advocate Candace Lerman to Lobby for Congressional Support of Vital OPEN Act During Rare Disease Week February 29 - March 3

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Candace Lerman, the Florida Director for the Rare Disease United Foundation, founder of RareCandace.com, and a passionate rare disease advocate, will visit the U.S. Senate next week to voice her support of the Orphan Product Extensions Now Accelerating Cures and Treatments (OPEN Act).

Rare Disease Advocate Candace Lerman is headed to Washington, D.C. for Rare Disease Week which runs February 29 - March 3 to educate U.S. Senators about the need for the Orphan Product Extensions Now Accelerating Cures and Treatments (OPEN Act). This legislation would allow rare disease patients to use FDA-approved drugs deemed safe and effective for other conditions.

Candace is the founder of RareCandace.com, where she blogs about issues surrounding her rare blood disorder, Immune Thrombocytopenia, and the Florida Director for the Rare Disease United Foundation. She also writes numerous articles on topics involving rare diseases, orphan drugs and biotechnology, and is a Juris Doctor candidate at the Shepard Broad College of Law at Nova Southeastern University.

Candace had a successful visit with lawmakers in the House of Representatives last year, in which she helped advocate for the OPEN Act, which was included in HR 6, the 21st Century Cures Act. She hopes to have the same level of success with her Senate visits next week.

Candace’s most recent article for the International Pemphigus and Pemphigold Foundation discusses her off-label use of the chemotherapy drug Rituxan (the type of use that would be permitted to all rare disease patients through the OPEN act), which put her rare disease in remission.

Despite the fact that there are over 7,000 known rare diseases and most of them have no FDA approved treatment, the OPEN Act has not been made a priority for the Health Education Labor and Pension committee. But Candace hopes that after Rare Disease Week and visits from her and other advocates, the committee will see the importance of the bill.

Candace will also be attending Rare Disease Day at the National Institutes of Health in Bethesda, Maryland on February 29, where she will meet with patients and researchers to discuss biomedical research impacting the rare disease community. The National Institutes of Health will also display artwork from Rare Disease United Foundation’s Beyond the Diagnosis art exhibit in honor of Rare Disease Day.

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Pamela Armstrong

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