The RARE Champions of Hope Awards celebrate, honor and recognize those in the rare disease community who are raising the bar through their innovative approaches to research, programming and advocacy to create meaningful impact in the rare disease space. Awardees are beacons of hope in the rare disease community who lean in, take risks and lead collaborative efforts to positively impact the lives of rare disease patients, caregivers and families across the globe.
In 2024, the Community nominated 181 individuals and organizations across five categories:
RARE Champion in Advocacy (Individual) – This award recognizes an individual rare disease patient or advocate who has created innovative programming and/or successful partnerships to support, educate, research or enable their communities in meaningful and impactful ways.
- Mackenzie Abramson
- Julia Alton
- Brandon Anderson
- Donna Appell
- Evren Ayik
- Melinda Bachini
- Carole Bakhos
- Kelly Berger
- Terry Jo Bichell
- Lara Bloom
- Laura Bonnell
- Kathryn Bryant Knudson
- Cagdas Canbolat
- Jennifer Canvasser
- Dave Clements
- Monica Coenraads
- David Coldiron
- Ricardo Correa
- Chandler Crews
- Kristen Davis
- Sofia de la Garza
- Melanie Dixon
- Ronisha Edwards-Elliot
- Heidi Edwards
- Aimee Foord, D.O.
- Deanna Fournier
- Ava Garnett
- Stephanie Gebel
- Mariah George
- Megan Golden
- Sanjana Goyal
- Samuel Habib
- Rachel Heilmann
- Michele Herndon
- Latika Hickey
- C. Isaac Iver Hoyt
- Muhammad Idris
- Nakisha Isom
- Ilana Jacqueline
- LaRita Johnson
- Jenny Jones
- Crystal King
- Lissette Kingo
- Emily Kramer-Golinkoff
- Caroline Kruse
- Luisa Leal
- Megan Leston
- Jennifer MacDonald
- Jesse Marimat
- Chelsey McCarthy
- Lisa McDaniel
- Debrena McEwen
- Bojana Mirosavljevic
- Connie Montgomery
- Demeshia Montgomery
- Amanda Moore
- Karen Morici
- Anna Morrow
- Hamzaoui Nabil
- Victoria Nedza
- Claire Oliver
- Lori Ortega
- Angela Papazoglou
- Effie Parks
- Jessica Patay
- Nadezda Pejovic
- Dr. Duncan Phillips
- Asif Raza
- Parisa Sanandaji
- Tameka Simmons
- Jill Sisco
- Marlene Soto
- Denis St. Martin
- Clare Stuart
- Cathleen Terrano
- Andre Van Niekerk
- Jill Vedder
- Dominique Viel
- Christine Von Raesfeld
- Amy Ward
- Bernie Williams
- Amy Wood
- Cori Woolf
RARE Champion in Advocacy (Organization) – This award recognizes a patient advocacy group/organization that has created innovative programming and/or successful partnerships to support, educate, research or enable their communities in meaningful and impactful ways.
- Angelman Syndrome Foundation
- ARRE Foundation
- Association of Tarlov Cyst
- Autoinflammatory Disease Alliance
- Barth Syndrome Foundation
- Boston International Turner Syndrome Summit
- Canadian Fabry Association
- Cetatea Voluntarilor
- Child and Youth Care Zimbabwe
- Courageous Parents Network
- Cure 4 The Kids Foundation
- Cure GABA-A Cure
- GRIN Foundation
- Debra of America
- Ducks for Dementia
- FOXG1 Research Foundation
- HCU Network America
- Heartcharged
- HelpCureHD
- HPS Network
- Leapcure
- Let Leona Roar Inc.
- Living with Holt-Oram Syndrome
- Lyme Fight Foundation
- Prune Belly Senegal
- PTEN Foundation
- RareGen
- Rare Village
- The Akari Foundation
- The CERN-Foundation
- The Guthy-Jackson Charitable Foundation
- The Isabella Santos Foundation
- The PLGA Foundation
- Through Everly’s Eyes
- Connecting Families UCD Foundation
- We Are Brave Together
RARE Champion in Industry – This award recognizes partners from biopharma who have demonstrated exceptional partnership in the rare disease space, launched innovative programming or pioneered new processes for engaging the patient community. Nominations in this category should include concrete examples and metrics to indicate what the initiative was, how it was successful and the impact it had on those being served.
- Irene Aquino
- Prasanthi Aripirala
- Wendy Erler
- Zach Gobst
- Latika Hickey
- Laura Illiescu
- Luisa Leal
- Paul Lim
- Erin Murphy
- Szymon Piatkowski
- Robert Ryan
RARE Champion in Research – This award recognizes trailblazers and leaders in rare disease research, drug development and scientific processes who have taken an innovative approach to advance outcomes for the rare disease community. Nominees in this category should be conducting patient-driven research, research in academia or research within an advocacy organization.
- Lindsay Alfano
- Annette Hatcher Brito
- Aimee Foord, D.O.
- Xian Gao
- John Garnett
- Sumit Gupta
- Melissa Haendel
- May Malicdan
- Sumreena Mansoor
- Hiroshi Mitsumoto
- Arnaud Monteil
- Tomi Pastinen
- Han Phan
- Vincenzo Salpietro
- Pedro Sanchez
- Amber Sapp
- Aaron Schokman
- Hilary Vernon, M.D., Ph.D.
- Shinya Yamamoto
RARE Champion in Health Equity – This award recognizes an individual rare disease patient or advocate who has created innovative programming and/or developed meaningful approaches to tackle the systemic and organizational challenges that contribute to an inequitable rare disease community. Nominations in this category should include the disparity the nominee is working to address, the underserved community the nominee is working to empower, and the impact the individual / their program has had on the identified community.
- Asociatia Cetatea Voluntarilor
- Annette Hatcher Brito
- Dr. Diana Castro
- Wendy Chung
- Deanna Darlington
- Eve Dryer
- Kimberly Haugstad
- Elijah Hunter
- Ismael
- Aditi Kantipuly
- Luisa Leal
- Demeshia Montgomery
- Lakeia Nard
- Manzi Ndamukunze
- Harsha Rajasimha
- Lakshmi Bremadesam Raman
- Umar Rehman
- Scott Reich
- Deborah Requesens
- Cathy Watson
- Michele Wright
Congratulations to all those nominated for this year’s Champions of Hope Awards. Awardees will be notified the week of June 24, 2024. All 2024 RARE Champions of Hope awardees will be announced and receive their awards Friday, September 27, 4:30-5:30pm CST during Week in Rare in Kansas City, Missouri from September 26-28, 2024.
.
Stay Connected
Sign up for updates straight to your inbox.