RESPONDING TO A CRISIS
ANNUAL REPORT
In 2020, COVID-19 brought the world to a halt, but the pandemic has not stopped the advocacy efforts of the rare disease community. It has not even slowed us down. Our community has always had to do things differently, to pivot and reimagine – and this year has been no exception. Before the pandemic struck, more than 900 rare disease advocates traveled from across the country to meet with their Members of Congress during Rare Disease Week on Capitol Hill. Despite its challenges, COVID-19 inspired us to transform our programs and events, enabling us to engage new advocates who would not otherwise have been able to participate. Members of Congress and Congressional staff joined us virtually for Rare Across America and Rare Disease Congressional Caucus Briefings, bringing advocacy to a whole new level. As we expanded our policy scope to address the urgent needs that COVID-19 created for our community, social unrest also highlighted the needs of our underserved minority rare disease patients. The Foundation’s Board of Directors made the decision to expand the Foundation’s mission to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
Table of Contents Responding to a Crisis
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EveryLife Foundation Team
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Changing Policy, Saving Lives
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Greater than Covid-19
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Advocates in Action
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Lifting Every Voice
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Every Voice Matters
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Engaging New Patient Communities
11- 12
2020 Income and Expenses
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EveryLife Foundation Board of Directors
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Working to fulfill our expanded mission, we were incredibly grateful to be able to increase our outreach and support of the community by: Establishing a Diversity Inclusion Advocacy Fellowship to reach underserved rare disease communities; Launching a State Advocacy Initiative to better support state and regional advocacy and state-based rare disease organizations; Doubling the number of Community Congress patient organization members who, alongside industry partners, are driving the conversation on urgent policy issues and Foundation programs and initiatives; Providing nearly $600,000 – double the amount provided in 2019 - in grants, travel stipends and educational scholarships through our Rare Giving and RAREis Scholarship Fund programs. Without you – the advocates, patient organizations, industry partners, and Congressional champions – none of our work would be possible. Thank you for continuing to advocate with us for diagnostics, treatments and cures. Sincerely,
Julia Jenkins Executive Director, The EveryLife Foundation for Rare Diseases
Mark Dant Chairman of the Board of Directors, The EveryLife Foundation for Rare Diseases
everylifefoundation.org @EveryLifeOrg 1
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