The YARR Program Manager provides support for the strategic priorities of the EveryLife Foundation for Rare Diseases’ patient engagement and YARR programming. This position works closely with the EveryLife Foundation team well and rare disease patient community.

2024 YARR Policy Campaign: Ensuring Access to Approved Treatments. Policy Area. YARR Angle. Background. I t is a m assiv e ef f ort to g et a m edication to F D A ap p rov al , b u t the. work does not stop there. The nex t hu rdl e is ensu ring p atients can. actu al l y access the treatm ent p ost- ap p rov al . The treatm ent has to

YARR members have a wide range of diagnostic experiences, sometimes even within the same rare disease communities. Receiving a diagnosis as early as possible equips pa tients to understand their condition, receive the proper treatment , and advocate for themselves. How can the perspectives of young adults inform this policy area? P o l ic y A r ea

Applications for the 2025 YARR Leadership Academy have now closed. All applicants will be notified of their application status in December. The EveryLife Foundation has met all of the requirements for Charity Navigator, has met all of the requirements of the National Health Council Standards of Excellence Certification Program®, and has earned ...

Amelia, diagnosed with Ehlers-Danlos Syndrome, Gastroparesis, and Narcolepsy, began her advocacy work in 2021 through the Young Adult Rare Representative (YARR) Program which Anneliese then joined following her 2022 diagnosis with Guillain-Barre Syndrome.

• Young Adult Representatives of RDLA (YARR) Meetup YARR Members will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of 16–30-year-olds who are building the next generation of rare disease advocates. TUESDAY, MARCH 1 1:00 PM – 5:00 PM EST • Hill Meetings Day 1

YARR Members are passionate advocates aged 16 to 30, and hail from diverse backgrounds within the rare disease community. Created to empower the next generation of advocates, YARR fosters confidence as these young individuals navigate their journey from childhood to adulthood. Leadership Academy For motivated young adults (18-30) eager

Jan 26, 2018 · Amelia, diagnosed with Ehlers-Danlos Syndrome, Gastroparesis, and Narcolepsy, began her advocacy work in 2021 through the Young Adult Rare Representative (YARR) Program which Anneliese then joined following her 2022 diagnosis with Guillain-Barre Syndrome.

• Young Adult Rare Representatives (YARR) Meetup YARR Members will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of individuals aged 16-30 who are building the next generation of rare disease advocates.

• Manages the YARR Program Manager, providing strategic direction and oversight inoptimizing the program and engaging young adults in the rare disease community, including expanding YARR representation across disease areas, geographies, and demographics;