Congratulations to the 2020 RARE Champion of Hope Award nominees. These individuals, organizations and collaborations are the groundbreakers, leaders and advocates who inspire and catalyze change in rare disease. Our community has recognized the following individuals and organizations as those who have made a significant impact in advocacy, industry, medical care and treatment, science and technology, and young rising leaders. Awardees will be honored November 12, 2020, at the RARE Champion of Hope Celebration.


Aaron Blocker
Aidan Abbott, National Foundation for Ectodermal Dysplasias
Alec Frazier, Director, Autistic Reality
Alexander Kolevzon, Mt. Sinai, Seaver Autism Center
Alexis Levine, Sister, Clinical Research Coordinator
Amalia Balart, International Prader-Willi Syndrome Organisation
Amanda Cali, The Radiant Hope Foundation, International FOP Association, Tin Soldiers
Ambre Minty, Chronically Strong
Anita Boland, Lexington Presbyterian Church
Anneliese Aguilar, Blounts Disease Strong Foundation
Anthony DeVergillo, Amicus Therapeutics
Anthony Reyers, The Norrie Disease Foundation
Anutin Charnvirakul
Asif Khan, International Huntington Association (IHA)
Ava Garnett
Avalon Budd, The Avalon Foundation
Barby Ingle, International Pain Foundation
Bojana Mirosavljevic, LIFE
Bonnie Sica, Mast Cell Hope
Brandon Beck, Narcolepsy Network
Brittany Anderson
Brittany Cocilova, Behind the Mystery
Brittany Cudzilo, Galactosemia Foundation
Brittany Stineman, Smash SMARD
Caroline Arnette, Narcolepsy Network
Chris Bombardier, Save One Life
Chris Peetz, Mirum Pharmaceuticals
Christine Von Raesfeld, Peoplewithempathy
Clinton Moore, Cystinosis Research Network
Cristol Barrett O’Loughlin, ANGEL AID CARES
Cynthia Zorn, Narcolepsy Network
Danilo Moretti-Ferreira, Instituto de Biociências – UNIVERSIDADE ESTAUAL PAULISTA – SP
Darci Sternen, Seattle Children’s Hospital and Patient-centered Laboratory Utilization Guidance Services (PLUGS)
Darlene Shelton, Danny’s Dose
Deborah Andio, Avascular Necrosis Osteonecrosis Support Group
Dr. Julie Saba, Professor of Pediatrics Division of Hematology/Oncology UCSF
Dr. Sherene Shalhub, University of Washington
Eric Phillips, International RSD Foundation
Felicia Morton, CGD Association of America
Felix Townsin, Cure Blau Syndrome Foundation
Fiona Tolich, Patient Voice Aotearoa
Gayle Temkin, Alyssa’s Angel Fund and Global Center for GSD
Giacomo Chiesi, Chiesi Global Rare Diseases
Glenna Steele, Glut1 Foundation
Halle Byers
Hong Li, Emory University
Ilyce Randell, Canavan Research Illinois
James (Jim) Romano, Patient Services, Inc.
Janet Bloor
Jeffrey Olin, Mount Sinai
Jerry Williams, Myositis Support and Understanding
John Ferman, Chronic Pain Partners and EDS Awareness
Julia Navarro
Katie Wright, The VEDS Movement/Marfan Foundation

Kaya Leijenhorst, Stichting SpierKracht

Kenneth Cox, Stanford Medicine and Children’s PSC Foundation

Kimberly Fry, SLC6A1 Connect

Kristin Archibald, Founder, NKH Crusaders

Lakshminarayan Ranganath, AKU Society

Lauren Foster

Lexi Townsin, Cure Blau Syndrome Foundation

Michael Collins, NIH NIDCR

Michael Goldberg, HUGS FOR MITO, INC.

Michael Grever, The Ohio State University – The James Cancer Hospital

Michael Levy, Massachusetts General

Michelle Erskine, The Aarskog Syndrome Foundation

Michelle Padilla, The Awareness Show

Mihalis Lionakis, NIH

Mika Covington, Founder and President of Next Generation of Cystinosis

Monkol Lek, Cure Rare Disease, Researcher

Neil Kumar, Ph.D., BridgeBio

Oyindamola Adeniyi, Foundation for Neuromuscular Support Nigeria

Pam Mace, Fibromuscular Dysplasia Association of America

Pam Stallings, HCU – USA

Paula Huston

Punita Gupta, St. Joseph’s Health

Rachel Belanger, Because of Bella

Richard Horgan, Founder and President

Robert Haws, Marshfield Clinic

Robert Long, Uplifting Athletes

Samantha Horowitz

Samantha Stallings, YARR – EveryLife Foundation – HCU – Rare Advocacy

Sarah Chisholm, BPAN Warriors

Sharon Lagas, Alport Syndrome Foundation

Siri Vaeth, Cystic Fibrosis Research, Inc.

Tessa Jensen

Tiffany Cook, CureDuchenne

Timothy Walbert, Horizon Therapeutics

Tuesdi Dyer, CFC international

Vaibhav Bhandari, Swavlamban Foundation, India

Vanessa Vogel-Farley, Dup15q Alliance, RARE-X

Yehuda Gelman, Highway of Hope


Agatha Obiageli Aghedo Memorial Foundation

Cold Agglutinin Disease Foundation

Cure Rare Disease

Cyclic Vomiting Syndrome Association

Fibromuscular Dysplasia Society of America

Health Advocacy Summit



Mitchell Thorp Foundation

My Epilepsy Story

National Foundation for Ectodermal Dysplasias (NFED)

Our Odyssey

SATB2 Gene Foundation

Sickle Cell Warriors

STXBP1 Foundation

Tanner Pharma Group

The Avalon Foundation