Raregivers100: Honoring 100 Changemakers in Rare and Chronic Disease
Meet the Raregivers100
Celebrating global leaders in rare and chronic disease advocacy, awareness, and caregiving
Welcome to the official launch of the Raregivers100, a tribute to 100 extraordinary individuals who are shaping the future of rare and chronic disease awareness, advocacy, and caregiving. From globally recognized voices to grassroots changemakers, these honorees are helping bring visibility, dignity, and action to communities too often left in the shadows.
This announcement offers a glimpse into the impact of the Raregivers100, celebrating standout leaders across categories such as storytellers, scientists, athletes, artists, policymakers, technologists, caregivers, and more. Individuals who are using their voices to elevate rare stories and amplify the emotional truths of caregiving. The Raregivers100 is more than recognition; it’s a movement powered by courage, community, and lasting impact.
Why the Raregivers100 Matters
When life gets medical, people get emotional. Caregivers, patients, and professionals face challenges that few can imagine. Their stories are often unheard, their emotional toll invisible. The Raregivers100 is about changing that narrative. By recognizing those who bring light to these experiences, whether through storytelling, research, or activism, we give voice to the unseen and create momentum for real-world change.
These honorees are proof that awareness is powerful. When the world pays attention, empathy expands, funding grows, research advances, and families and physicians feel less alone.
How We Chose the Raregivers100
The honorees were selected through a dynamic process that blended technology, community input, and subject matter expertise:
In the mid-2020’s our CEO, Cristol Barrett O’Loughlin, proposed an idea to “aggregate the global voices in rare and chronic disease” so we can create a “global awareness movement like LIVE AID”. The concept was modeled after strategic initiatives like the IBM CEO Study, Time100: Most Influential People, The Hollywood Reporter Roundtables series, and People Magazine’s Sexiest Man Alive graphical format.
In 2023, a cohort of Fortune 500 senior marketing leaders from Arthur W. Page Society adopted ‘Raregivers by ANGEL AID’ as their 3-day case study at USC Annenberg School of Communications and utilized Artificial Intelligence to identify partnerships with aligned companies, create a standout moment for Raregivers and aggregate disparate digital influencers in rare, chronic and complex diseases. The cohort also recommended a full rebrand from ANGEL AID to Raregivers™.
In 2024, during a Microsoft Hackathon, an AI Hack-for-Good collaboration between Raregivers Coalition members and Microsoft employee volunteers helped identify nearly 200 influential voices globally and launched a community nomination campaign to surface niche influencers.
Community nominations captured the grassroots heroes shaping rare and chronic disease support.
Teams at Raregivers and Whink! Creative prioritized relevancy, reach, and personal connection to rare or chronic disease, caregiving or professional support serving those with medical complexity around the world.
Final selections were based on impact, storytelling power, personal connection to the rare or chronic disease experience, and alignment with the Raregivers mission.
To learn more, visit our Raregivers100 program page.
Honorees by Category
Activists / Philanthropists / Policymakers
Structural change requires funding, legislation, and bold vision. These honorees are advancing all three. From reshaping national policy to ensuring equitable research funding, this group is paving the way for long-term support and systemic transformation across the rare disease space.
Lateefah Simon
A lifelong disability and racial justice advocate, Rep. Simon is congenitally blind and brings lived experience to her legislative leadership. Her advocacy centers on inclusive infrastructure, caregiver equity, and systemic reform, especially for communities impacted by medical complexity.
Actors / Actresses
Actors have a unique ability to humanize complex issues, and many on this list have used interviews, roles, and public platforms to normalize the experiences of caregiving, disability, and rare disease. Their stories ripple far beyond Hollywood, challenging stigma, encouraging earlier diagnoses, and fostering empathy among millions of fans.
Sam Humphrey
Best known for The Greatest Showman, Sam has used his platform to speak out about living with acrodysplasia and Crohn’s disease.
Artists / Authors / Poets / Podcasters
Storytelling is one of the most powerful tools in advocacy. This group includes memoirists, illustrators, podcasters, and poets who have turned personal pain into art, education, and connection. Their narratives help caregivers and patients feel seen and help others understand.
Effie Parks
As the host of Once Upon a Gene, she creates space for honest conversations about caregiving, advocacy, and resilience.
Athletes / Trainers
Whether breaking physical boundaries or advocating off the field, these athletes embody determination in the face of adversity. Several have shared their journeys as rare disease warriors or caregivers, inspiring young people with chronic conditions to keep moving forward.
Tony Hawk
Professional skateboarding icon, Tony uses his podcast Hawk vs. Wolf to amplify rare disease voices.
Business / Technology Leaders
Innovation and leadership in healthcare aren't just clinical—they’re also corporate. These executives, founders, and developers have pushed for inclusion, access, and equity within their companies and beyond.
John Crowley
As the co-founder of Amicus Therapeutics and a rare disease parent, he has transformed personal tragedy into global advocacy.
Healthcare Professionals / Scientists
This group includes compassionate and pioneering voices in medicine. The physicians, researchers, and leaders improving lives across rare and complex conditions.
Dr. Emil Kakkis
Founder of Ultragenyx and the EveryLife Foundation, Dr. Kakkis is a global force for therapeutic equity and patient access.
Media Moguls / Journalists / Producers
Media professionals are the gatekeepers of public dialogue. These honorees tell rare disease stories with care, accuracy, and empathy—often drawing from lived experience.
Lisa Burke
Professional broadcaster and Raregivers board member, Lisa bridges media and science to center brain health and caregiving.
Musicians / Singers / Songwriters
Music has a unique ability to reach the heart. These artists have created anthems of resilience, spoken openly about diagnosis, and offered solidarity through their work.
Lady Gaga
By sharing her journey with fibromyalgia, she has used art and advocacy to destigmatize invisible illness.
Nonprofit Leaders / Global Advocates
Nobody understands medical complexity like those who live it. These patient and parent advocates have launched foundations, shaped policy, and redefined what care can look like.
Nikki Lilly
An award-winning creator and AVM patient, Nikki empowers millions through digital storytelling.
Spiritual / Mental Health / Wellness Gurus
Emotional health is often overlooked in the rare disease journey. These therapists, teachers, and caregivers help families stay grounded through uncertainty.
Emma Heming Willis
A caregiver and mental health advocate, Emma has brought new visibility to neurodegenerative disease support.
This is just the beginning.
Honorees will be invited to amplify the voice of empathy throughout the year in Raregivers activations around global mental health days, targeted rare and chronic disease awareness events, and caregiver recognition days.
For more program information, please visit: https://raregivers.global/raregivers100
Explore the Full Raregivers100 List
The following honorees have been recognized for their leadership, advocacy, and impact in rare and chronic disease communities. Social media references and public links are provided for attribution. Not all honorees have been formally notified at the time of publication. The purpose of assembling the Raregivers100 is to recognize and honor the voices illuminating the emotional impact of living with medical complexity.
Activists / Philanthropists / Policymakers
Nicola Blackwood
Dr. Priscilla Chan
Nadia Dahmane
Melinda Gates
Angela Ramirez Holmes
Shannah Hudson
Debra Miller
Sparsh Shah
Rep. Lateefah Simon
Shandra Trantham
Actors / Actresses
Christina Applegate
Fan Bingbing
Bradley Cooper
Colin Farrell
Chris Hemsworth
Sam Humphrey
Dakota Johnson
Dwayne Johnson
Eva Longoria
Emma Watson
Artists / Authors / Poets / Podcasters
Madeline Cheney
Sarita Edwards
Haben Girma
Sandra Kitt
Miles Levin
Effie Parks
Jen Pastiloff
Sir Terry Pratchett
Jess Ronne
Athletes / Trainers
Gail Devers
Steve Gleason
Tony Hawk
Jim Kelly
Michelle McCool
Lionel Messi
Casey O'Brien
Yip Pin Xiu
Venus Williams
Russell Wilson
Business / Technology Leaders
Karen Aiach
Danny Bar-Zohar
Marc Benioff
John Crowley
Aaron Horowitz
Denisa McKnight
Lucia Penrod
Amrit Ray
Scott Schliebner
Katherine Stueland
Healthcare Professionals / Scientists
Dr. Deepak Chopra
Dr. Thomas F. Dunne
Dr. Elissa Epel
Dr. David Fajgenbaum
Dr. Al Freedman
Dr. Paul Harmatz
Dr. Katey Hoffman
Dr. Emil Kakkis
Lucy McKay
Dr. Harsha Rajasimha
Media Moguls / Journalists / Producers
Peter Alexander
Lisa Burke
Katie Couric
Jenny Cape
Richard Engel
Lucy Frank
Patrick James Lynch
Jason + Devin McCourty
Robin Roberts
Suriya
Musicians / Singers / Songwriters
Missy Elliott
Lady Gaga
Selena Gomez
Elton John
Nick Jonas
John Mayer
Dolly Parton
Shakira
Ed Sheeran
Jordin Sparks
Nonprofit Leaders / Global Advocates
Nawaal Akram
Brooke Eby
Pat Furlong
Pamela Gavin
Nikki Lilly
Tommy Pham
Katie Price
Paige Rivard
Melissa Schlemmer
Zhang Wei
Spiritual / Mental Health / Wellness Gurus
Kristen Renee Appleby
Kyle Bryant
Jasmine Hightower
Muniba Mazari
Nikki McIntosh
Melody Olander
Jessica Patay
Lizzie Velasquez
Nick Vujicic
Emma Heming Willis
