Tiffani Pekkala, a Camas teen, joined other young people between the ages of 15 and 22 at the nation’s capitol in Washington, D.C.
They were there to tell elected officials their personal stories of living with rare and life-threatening diseases.
Pekkala, 17, suffers from primary immune deficency disease, a genetic condition which causes part of the body’s immune system to not function properly.
Even though most of the attendees were meeting each other for the first time, Pekkala and the other participants in CSL Behring’s Raise Your Voice! youth empowerment program shared camaraderie and a bond that transcended geography, socioeconomics and ethnicity, according to organizers.
The bond is primary immunodeficiency diseases, serious conditions that many of the attendees suffered with for years before being diagnosed.
The Immune Deficiency Foundation hosted RYV! in conjunction with its Advocacy Day event with a Local Empowerment for Advocacy Development grant and professional advocacy staff support from CSL Behring. It helps patient groups train young people with rare and serious conditions such as PIDD, hemophilia, von Willebrand disease, hereditary angioedema and inherited respiratory disease to apply their unique insights to public policy discussions with their representatives.
At the heart of RYV! is the message that people with rare diseases can never take access to care for granted, and that it is essential for them to take an active role in safeguarding their access to the therapies and treatment they need by participating in grass roots advocacy, organizers said.
“The Immune Deficiency Foundation supports advocacy to promote health care legislation and policies that positively affect the primary immune deficiency community,” said Larry La Motte, director of public policy at IDF. “Raise Your Voice! is a wonderful way to involve our younger patients and motivate them to learn about the fundamentals of public policy and about being their own advocates.”
Before visiting Capitol Hill, the participants were trained in the key issues that face them as patients with PIDD, including the health care reform law and what it means for them, and the Medicare IVIg Access Act, a bill that will significantly affect patients with PIDD.
Attendees also worked on how to effectively present their stories to representatives.
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Along with advocacy efforts, IDF provides educational programs and materials that offer medical information, guidance about health insurance issues, life management and patient care resources, and support for patients and family members.