OverviewHeadquarters: Washington D.C., DC, USAWebsite: everylifefoundation.orgFounded: 2009Areas of Focus: Diseases / Disorders About UsMission: We empower 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. Programs: Rare Disease Legislative Advocates (RDLA) knows that patients and caregivers are the key to changing public policy on the state and federal level. RDLA provides free resources, tools and events for patients, caregivers and organizations. Offering: Action alerts, Legislative scorecards, online advocacy tools and monthly webinars and newsletters. Young Adult Rare Representatives (YARR) are a highly motivated group of rare disease community members between 16 and 30 years old, including patient advocates, siblings, caregivers, and loved ones. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates. Community Congress is a membership-based program and strategic advisory council dedicated to bringing together patient organizations, industry leaders and other rare disease stakeholders. Membership is free for all 501 c3/4 rare disease patient organizations based in the U.S. Offering: access to quarterly strategic council calls, an online membership portal, monthly newsletters and event scholarships. Rare Artist is a national platform for artists to advocate through visual artwork by submitting their pieces and artist statements in an annual contest. Offering: cash prizes, artwork showcased during Rare Disease Week on Capitol Hill and displayed at the Rare Hub and Artist-to-Advocate training. The Rare Hub is a community workspace created to improve cross disease collaboration and legislative advocacy in the heart of Washington, DC. The #RAREis Scholarship Fund provides $5,000 scholarships to over 30 awardess in the patient community each year. Applicants include undergraduates, those seeking graduate programs and non-traditional students. Why Work For Us?: Our friendly and passionate team works every day to improve the lives of the more than 30 million Americans suffering from one or more of the over 10,000 known rare diseases. We do this by educating and activating the patient community to ensure they are heard by policy makers in government and the healthcare industry. The EveryLife Foundation’s Culture of Caring encourages team members to care about one another, care about their work and care about the patient community. industry: Nonprofit
