Note: This press release was republished with permission from the EveryLife Foundation for Rare Diseases.
The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, has launched a new training program for young adults in the rare disease community called the Young Adult Representatives of RDLA (YARR) Leadership Academy. The program is designed to provide a clear pathway for the next generation of rare disease leaders to represent patients in a variety of professional career opportunities. U.S. residents ages 18 through 29 are encouraged to apply through February 15th at HearUsYARR.org.
“We’re looking to tap into the drive and energy of the young adult community. The Academy will equip them with the skills and knowledge necessary to be successful in professional patient representative rolls,” said Lindsey Cundiff, YARR program manager and EveryLife Foundation Associate Director of Patient Engagement. “In government, nonprofits, and the healthcare industry, the patient perspective is vital. Patients are the driving force behind closing the innovation gap and ensuring patients have access to safe and effective treatments. Through the Academy, we’re going to make sure young adults are prepared to make their voices heard.”
During a series of online courses offered this spring, Academy students will learn about the roles and opportunities for patient representation in policy making, drug development and the regulatory process and the steps it takes to get there.
Students will gain mastery of patient representativeness in the rare disease community, practical skills to achieve career development, and networking opportunities with fellow young adults and experts in the rare disease community.
Academy graduates will receive a completion certificate and a $1,000 travel stipend to participate in a graduation ceremony during Rare Disease Week on Capitol Hill, an annual rare disease advocacy event.
Participation is by application only and space is limited. Applicants are required to submit a letter of reference and a short essay.
To learn more, view the curriculum and to apply, go to HearUsYarr.org.
About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
A disease is defined as rare when it affects fewer than 200,000 people in the United States. On average, rare disease patients must wait an average of six years after symptoms first present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children, thirty percent of whom will not live to see their fifth birthdays.
