2018 Champion of Hope Nominees

Congratulations to our 2018 RARE Champion of Hope Nominees!

Over 100 individuals and organizations worldwide were nominated by their peers for the 2018 RARE Champion of Hope awards to honor their notable efforts in rare disease advocacy, science, medical care and treatment, teen advocacy, collaborations in advocacy, and collaborations in science and technology. Please see the full list of nominees and a map demonstrating the various locations of those nominated below.

 

Honorees will be announced August 7, 2018.

Annie Achee, The National Leiomyocarcoma Foundation – RARE Champion in Collaborations in Advocacy
Brittany Anderson – RARE Champion in Advocacy
Donna Appell, HPS Network – RARE Champion in Advocacy
Lakiea Bailey, Sickle Cell Community Consortium – RARE Champion in Advocacy
Aaron Blocker – RARE Champion in Advocacy
Lara Bloom, The Ehlers-Danlos Society – RARE Champion in Advocacy
Nadia Bodkin, Rare Advocacy Movement – RARE Champion in Advocacy
Elena Boldina – RARE Champion in Advocacy
Kathy Brewer, ECDGA – RARE Champion in Advocacy
Velvet Brown-Watts, Supporters of Families with Sickle Cell Disease, Inc. – RARE Champion in Advocacy
Avalon Budd, The Avalon Foundation – RARE Champion in Teen Advocacy
Suzanne B Cassidy, Benioff Children’s Hospital – RARE Champion in Advocacy
Brittany Cocilova, Access Health TV – RARE Champion in Adovcacy
Bill Coogan, The XLH Network, Inc. – RARE Champion in Advocacy
Lauren Cox, Fibrous Dysplasia Awareness – RARE Champion in Advocacy
Hal Dietz, John Hopkins Hospital – RARE Champion in Advocacy
Tom Defay, Alexion – RARE Champion in Collaborations in Science & Technology
Rebekah Dorr, Myasthenia Gravis Hope Foundation – RARE Champion in Advocacy
Katheryn Elibri Frame, CDKL5 Research Collaborative – RARE Champion in Advocacy
Billy Ellsworth – RARE Champion in Teen Advocacy
John Ferman, Chronic Pain Partners – RARE Champion in Advocacy
Can Ficicioglu, The Children’s Hospital of Philadelphia – RARE Champion in Medical Care & Treatment
Anne-Marie Fields – RARE Champion in Advocacy
Muriel Finkel, Amyloidosis Support Groups – RARE Champion in Advocacy
Crosby Fitzsimmons – RARE Champion in Advocacy
Deborah Fowler, Soft Bones – RARE Champion in Advocacy
Bruce Friedman, DC Outreach – RARE Champion in Advocacy
Kavi Gandhi, Yash Gandhi Foundation  – RARE Champion in Teen Advocacy
Ava Garnett – RARE Champion in Advocacy
Gidon Goodman, Gaucher Association of Australia & New Zealand – RARE Champion in Teen Advocacy
Maria Hadjidemetriou, Cooley’s Anemia Foundation – RARE Champion in Advocacy
Melissa Hogan, Project Alive – RARE Champion in Advocacy
Elena Hung, Little Lobbyists, LLC – RARE Champion in Advocacy
Barby Ingle, International Pain Foundation – RARE Champion in Advocacy
David Jacob, ThinkGenetic – RARE Champion in Advocacy
Dan Jefferies – RARE Champion in Advocacy
Emma Johnston – RARE Champion in Teen Advocacy
Monika Jones, The Brain Recovery Project – RARE Champion in Advocacy
Terri Klein, MPS Society – RARE Champion in Collaborations in Advocacy
Bethany LaPrad – RARE Champion in Teen Advocacy
Danielle Leach, St. Baldrick’s Foundation – RARE Champion in Advocacy
Stacie Lindsey, Cholangiocarcinoma Foundation – RARE Champion in Advocacy
Rob Long, Uplifting Athletes – RARE Champion in Advocacy
Isabelle Lousada, Amyloidosis Research Consortium  – RARE Champion in Collaborations in Science & Technology
Cindy Luxhoj, Alagille Syndrome Alliance – RARE Champion in Advocacy
Pamela Mace, Fibromuscular Dysplasia Society of America – RARE Champion in Advocacy
Angel Male – RARE Champion in Advocacy
Punam Malik, Cincinnati Children’s Hospital – RARE Champion in Science
Autumn McCuan – RARE Champion in Advocacy
Paul McDonagh, Alexion – RARE Champion in Collaborations in Science & Technology
Julie McKeough, Invitae – RARE Champion in Collaborations in Science & Technology
Debra Melikian – RARE Champion in Advocacy
Emily Merrill, Children’s Craniofacial Association – RARE Champion in Teen Advocacy
Nicolas Meyering, CCHS Family Network – RARE Champion in Advocacy
Courtnay Midkiff – RARE Champion in Advocacy
Gail Moore, Horizon Pharma – RARE Champion in Collaborations in Advocacy
Maeve O’Connor – RARE Champion in Medical Care & Treatment
Dakota Olive – RARE Champion in Teen Advocacy
Austin Olive – RARE Champion in Teen Advocacy
Nita Patel, Amicus Therapeutics – RARE Champion in Advocacy
Nathan Peck, Cure VCP Disease – RARE Champion in Advocacy
Luke Rosen, KIF1A.org – RARE Champion in Advocacy
Seth Rotberg, Huntington’s Disease Youth Organization – RARE Champion in Advocacy
Allena Savage – RARE Champion in Advocacy
Hillary Savoie, The Cute Syndrome Foundation – RARE Champion in Advocacy
John Schreiber – RARE Champion in Medical Care & Treatment
Avery Schuckmann – RARE Champion in Advocacy
Vanita Sharma, Strongbridge Biopharma – RARE Champion in Collaborations in Science & Technology
Darlene Shelton, Danny’s Dose – RARE Champion in Advocacy
Perry Shieh, UCLA – RARE Champion in Medical Care & Treatment
Jason Sicklick, UCSD Moores Cancer Center – RARE Champion in Medical Care & Treatment
Jill Sisco, Acromegaly Community – RARE Champion in Advocacy
Lakeisha Smith, Arachnoiditis Helping Each Other Cope – RARE Champion in Advocacy
Skye Miu Steppe, FD Warriors – RARE Champion in Advocacy
Andrea Taylor, ATOF – RARE Champion in Advocacy
Carina Thurgood, The Maddi Foundation – RARE Champion in Advocacy
Ross Tolentino – RARE Champion in Advocacy
Narayanan Veeraraghavan, Rady Children’s Hospital San Diego – RARE Champion in Collaborations in Science & Technology
Raymond Wang, CHOC Children’s Hospital – RARE Champion in Medical Care & Treatment
Norman Winnerman – RARE Champion in Advocacy
Calum Yacoubian, Clinithink – RARE Champion in Collaborations in Science & Technology
Angela Young – RARE Champion in Advocacy
Dina Zuckerberg, My Face – RARE Champion in Advocacy