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Awards2017 - 2018SponsorshipOpportunities

AwardsThe RareVoice Awards is an annualcelebration to honor advocates who giverare disease patients a voice on Capitol Hill.Patient advocates, industry executives, andcongressional and government agency staffgather to honor these outstanding advocatesfor the rare disease community.The 6th AnnualRareVoice AwardsNovember 15, 2017Arena StageWashington, D.C.6:00 p.m. Cocktail Reception6:30 p.m. Congressional Toast8:00 p.m. Awards Ceremony9:00 p.m. After Party CelebrationTickets are complementary for the generalpublic, members of Congress, Congressionaland governmental staff.Proceeds from the RareVoice Awards eventgo toward supporting Rare DiseaseLegislative Advocates (RDLA).RDLA is a program of the EveryLifeFoundation for Rare Diseases designed tosupport the advocacy of all rare diseasepatients and organizations. By growing thepatient advocacy community and workingcollectively, we can amplify our manyvoices to ensure that rare disease patientsare heard in state and federal government.RDLA provides free resources for successfulgrassroots advocacy and serves as aclearinghouse of ideas that is open to allmembers of the rare disease community withan interest in sharing information aroundcommon causes and advocating for theintroduction or enactment of legislation.2RareVoice Awards

Past AwardsIn its 6th year, the RareVoice Awards is RDLA’s signature annualcelebration to honor those whose advocacy for legislation hasraised the “voice” of the rare disease community at the federaland state level. This is a widely attended, free public event forpatient advocates, congressional and government agency staffand industry to celebrate the accomplishments of the honorees.Award recipients are chosen by committee from nominationsreceived from the rare disease community. Honorees receive an“Abbey” statuette, named for Abbey Meyers, founder of theNational Organization for Rare Disorders (NORD). Past recipientsof the Abbey include:Lifetime Achievement2012 Abbey MeyersCongressionalLeadership2013 Patricia Furlong2012 Hon. Michael McCall2014 Stephen Groft, Pharm.D2012 Hon. Cliff Stearns2015 Hon. Fred Upton2013 Hon. Michael Burgess, MD2016 Hon. Orrin Hatch2013 Illeana Ros-Lehtinem2016 Ronald Bartek2014 Hon. David McKinley, PE2014 Hon. Doris Matsui2015 Hon. Gus Billirakis2015 Hon. GK Butterfield2015 Hon. Diana DeGette2016 Hon. Joseph Crowley2016 Hon. Lamar AlexanderCongressional Staff2012 Thomas Power2012 Emily Shetty2012 Andy Taylor2013 Art Estopinan2014 Cheryl Jaeger2015 Saul HernandezState Legislator2016 Richard Pan, MD32015 Clay Aspach2016 Grace StuntzRareVoice Awards

Past AwardsFederal Agency2013 Mike AstureSpecial Presentation/Patient Advocate2013 Janet Woodcock, MD2012 Mark Dant2014 Allen E. Guttmacher, MD2013 John F. Crowley, JD, MBA2015 William A. Gahl, MD, PhD2014 Jonny Lee Miller2016 John Gallin, MDState Patient Advocacy2014 Jeff Leider2015 Patricia Weltin2016 Gina Szajnuk2016 Sabrina Low-DuMoundFederal PatientAdvocacy2012 Nancy Goodman2012 Roy Zeighami2013 Jill Wood2014 National Down2014 Gabriella Miller2015 Lisa & Max Schill2016 David Fajgenbaum, MD4RareVoice Awards

Awards2017 - 2018SponsorshipOpportunitiesAs an industry sponsor of RareVoice, you aresupporting our work to educate rare diseaseadvocates about how legislation and policy impactthe availability and access to treatments and toprovide the necessary resources to be successfullegislative advocates. The proceeds from theRareVoice Awards also benefits our advocacyprograms offered during Rare Disease Week onCapitol Hill.Support from our industry partners has been criticalto our progress, but there is still significant work to bedone and we greatly appreciate your consideration ofsupport of the RareVoice Awards.5RareVoice Awards


Making an ImpactWe strive to make an impact and are truly grateful to have a wonderful team of sponsors,organizations, award recipients, professional leaders and advocates who work with us toaccelerate the process to finding cures.Pat FurongDavid Fajgenbaum, MD, MBA, MSc“Receiving the Rare Voice Award was incrediblebecause it felt like it was a tribute to my sons, thattheir lives mattered and a tribute to all those whofollow in their footsteps. One of the many things Ilove about the EveryLife Foundation are the people– they are changing the world by connectingpeople who are committed to make a difference.”“As a rare disease patient and physician-scientist, Ihave been amazed by the incredible work that theEveryLife Foundation, RDLA, and the winners of theRareVoice awards do to accelerate thedevelopment of life-saving therapies. They giveme hope for my future and the future for so manyothers with rare diseases. I was so honored toreceive the RareVoice award last year among thehundreds of other rare disease patients and lovedones who fight alongside me and deserve theaward just as much as I.”Founding President and CEO of Parent ProjectMuscular Dystrophy (PPMD)Asst. Prof. of Medicine, University of PennsylvaniaAssoc. Dir., Penn Orphan Disease CenterExec. Dir., Castleman Disease Collaborative NetworkJIll WoodCo-Founder Jonah’s Just BegunSabrina Low-Dumond“What makes the RareVoice Awards so special isthat our rare disease community votes on it.People we admire and look up to. I have takeninspiration from honorees before me and I amsure it will continue to inspire advocates to getwork done.”7Parent Advocate“Whether you’re participating in a clinical trial,serving on a patient advisory board, starting apatient organization or volunteering, your ‘voice’ ismoving the rare disease community forward andthat is what is important.”RareVoice Awards

AwardsHeadquarters: 77 Digital Drive, Suite 210 Novato, CA 94949Office: (415) 884-0223440 First Street Northwest, Suite 430 Washington, DC 20001(202) 697-RARE(7273) rareadvocates.org/rarevoice-awards#RareVoiceAwards

2012 Hon. Michael McCall 2012 Hon. Cliff Stearns 2013 Hon. Michael Burgess, MD 2013 Illeana Ros-Lehtinem Hon. David McKinley, PE 2014 Hon. Doris Matsui 2015 Hon. Gus Billirakis 2015 Hon. GK Butterfield 2015 Hon. Diana DeGette 2016 Hon. Joseph Crowley 2016 Hon

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