2023 RARE Champions of Hope Nominees Announced

July 12, 2023

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 2023, the Community nominated 104 individuals and organizations across three categories: 

RARE Champion in Advocacy – This award recognizes an individual or organization who has created innovative programming and/or successful partnerships to support, educate, research or enable their communities in meaningful and impactful ways. 

  • Mackenzie Abramson
  • Dr. Allyson Berent
  • Mandi Blue
  • Laura Bonnell
  • Dina Chon
  • Cecilia Chowdhary
  • Marianne Clancy
  • Marjorie Dejoie-Brewer
  • Anthony DeVergillo
  • Tim Doyle
  • Nicole Drey
  • Karen Durrant
  • Deanna Fournier
  • Barbara Haas-Givler
  • Ritu Jain
  • Jenny Jones
  • Tatiana Kulesha
  • Annette Logan-Parker
  • Pamela Mace, RN
  • Steve Maier
  • Liz Marfia-Ash
  • Chelsey McCarthy
  • Sandra McEntee
  • Mary McGowan
  • Connie Montgomery
  • Amanda Moore
  • Felicia Morton
  • Wesley Mulcahy
  • Isaac Okello
  • Dr. Jeffrey Olin
  • Danielle Petilli
  • Frances Pimentel
  • Adam Prymas
  • Nthabeleng Ramoeli
  • David Ross
  • Sara Rothschild
  • Bina Shah
  • Dionne Stalling
  • Katie Stevens
  • Gayle Temkin
  • Fiona Tolich
  • Pamela White
  • Michele Wright
  • Melissa Yeager

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. 

  • Brittany Cocilova
  • Amy Grover
  • Carri Levy
  • Claire McCabe
  • Molly Mager
  • Tatiana Makyx
  • Mara Peters
  • Justine Ravindranath
  • Marek Skotnicki

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.

  • Tim Benke
  • Chip Chambers
  • Carlos Ferreira
  • Harrison Gabel
  • James Gallagher
  • Nicole Johnson
  • Helen Leonard
  • Emmanual Mignot
  • Allison Moore
  • Manoj Pandey
  • Dr. Nara Sobreira
  • Karen Templeton
  • Igor Ulitsky
  • Esmerelda Vazquez
  • Anne Wheeler

Congratulations to all those nominated for this year’s Champions of Hope Awards. Awardees will be publicly announced the week of July 17, 2023. 

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