The RARE Voice Awards are presented by RARE Advocates, honoring members of the community who help amplify the voice of the rare disease community in state and federal policy on Capitol Hill.
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About the RARE Voice Awards
The RARE Voice Awards honors advocates who champion and amplify the rare disease patient voice in state and federal policy. Finalists are selected by a committee from nominations made by the rare disease community.
RARE Voice Awardees receive a RARE Artist piece crafted by artists within the rare disease community. These art pieces are sourced from the awardees’ home states whenever possible to signify the sense of community among those touched by rare diseases. The combination of recognition, art, and local connection makes the RARE Voice Awards a powerful celebration of advocacy.
2025 RARE Voice Award Recipients
Congratulations to the 2025 RARE Voice Awards Recipients!
RARE Voice Awards recipients are chosen by a committee from nominations received from the rare disease community.
Federal Advocacy Patient Advocate or Organization
Foundation for Sarcoidosis Research
What inspires your advocacy?
“Advocacy is about making sure no one is left out. The chance to participate in research should never depend on race, income, or job security. It’s easy to get lost in numbers, but the voices of patients remind us that every number is a person. When I hear from patients choosing between their health and their job, I know why this work matters. Their courage inspires me to keep pushing for a future where care and clinical trial opportunities are within reach for everyone. “
What does your RARE Voice nomination mean to you?
“This nomination means more than words can express. It’s not just recognition of our work but a celebration of the patients, caregivers, and partners driving progress. It reminds me that advocacy is most powerful when collective and that the change we’re making is real and transformational. This recognition strengthens my commitment to keep breaking down barriers and fighting for a future where no patient is left behind and every community has a voice.”
State Advocacy Patient Advocate or Organization
Tiffany House
What inspires your advocacy?
“Over the years, as advances in treatment have emerged, the Pompe community’s hopes have evolved. In the beginning, our hope was for a treatment that would slow the disease. Today, with multiple treatment options and new approaches in development, our hope is for better treatments, earlier diagnosis worldwide, and improved access to expert clinicians.”
What does your RARE Voice nomination mean to you?
“While Tiffany cannot respond personally, Tiffany’s family and assistant, Juls Williams, are grateful to speak on her behalf. We are deeply honored by her nomination for EveryLife’s RARE Voice Award. Tiffany passed away on May 25, 2025, and this recognition affirms the lasting impact of her advocacy, courage, and dedication to the rare disease community.
Tiffany never sought accolades or the spotlight. She focused on raising awareness of Pompe disease—especially newborn screening and early diagnosis—while advocating for the rare disease community and the urgent needs of patients and families. She reminded us that the work is far from over and that we must continue striving for better treatments, improved management, and deeper understanding. Her voice and vision remain a guiding light, and we thank you for honoring her legacy. ”
Federal or State Advocacy Youth or Teen
Emily Brubaker
What inspires your advocacy?
“What inspires me is my own experience growing up with a rare congenital condition and the challenges that come with it. But even more, I’m inspired by others in the rare disease community. Every time I meet someone with a congenital anomaly sharing their story or pushing for change, I’m inspired. I also hope my journey shows other youth that their voice matters and that even at a young age, they can create real change by standing up for what they believe in.”
What does your RARE Voice nomination mean to you?
“Being nominated for a RARE Voice Award means so much to me. It recognizes the work I’ve put into advocating for the Ensuring Lasting Smiles Act and raising awareness about rare diseases. This nomination reminds me that the work I’m doing is making a difference, encourages me to keep pushing forward, and makes me feel honored to be considered.”
DEIA Empowerment Patient Advocate or Organization
Rare Disease Diversity Coalition
What inspires your advocacy?
“We are inspired by patients and caregivers who show resilience in the face of inequity. Their stories drive us to turn evidence into action, whether through policy, provider education, or research reforms, so that underrepresented rare disease communities are no longer invisible. As the only national rare disease coalition dedicated to advancing equity for marginalized populations through both community engagement and legislative advocacy, RDDC occupies a vital space in the movement: transforming lived experience into systemic change and ensuring that equity is not an afterthought, but the foundation of progress.”
What does your RARE Voice nomination mean to you?
“RDDC is deeply humbled and honored by this RARE Voice nomination. It affirms that expanding representation, fairness, and access is not a side issue, but central to the future of rare disease advocacy. This recognition underscores that RDDc’s approach of bringing every voice to the table, especially those historically unheard, can and does change the trajectory of care, research, and policy for millions. This nomination is both a celebration of progress and a reminder of the sacred responsibility to keep using our collective voice for equity. “
Past RARE Voice Awardees
2024
- Jacqueline Baggett – Office of Representative Brian Fitzpatrick, Federal Advocacy – Congressional Staff
- Sara Maskornick – Senate Committee on Health, Education, Labor and Pensions, Federal Advocacy – Congressional Staff
- Kelly Berger, Accessible Air Travel Proposal Rule & FAA Reauthorization, Federal Advocacy by a Patient Advocate or Organization
- The Office of Orphan Products Development (OOPD) – U.S. Food and Drug Administration (FDA), Federal Agency – Individual, Team, or Office
- Delegate Candi Mundon King – Virginia House of Delegates (D), State Advocacy – State Legislator
- Christina Campos, CCM Advocate, State Advocacy – Patient Advocate or Organization
- Taylor Spence, Federal Advocacy – Youth or Teenager
- Emmalyn Hudson, State Advocacy – Youth or Teenager
- Carter Hemion, Diversity Empowerment
- Katrina Byrd, Artist-to-Advocate
View 2024 RARE Voice Awards recording
2023
- Amanda Lincoln, Senate Committee on Health, Education, Labor and Pensions
- Lucas Lam, Office of Representative Eric Swalwell (CA-14), Federal Advocacy – Congressional Staff
- Mindy Henderson and Madison Lawson, Muscular Dystrophy Association, Federal Advocacy by a Patient Advocate or Organization
- Philip “PJ” Brooks, National Center for Advancing Translational Science, Kelly Buckland, U.S. Department of Transportation, Federal Advocacy – Federal Agency Staff
- Representative Liz Reyer of Minnesota, State Advocacy by a State Legislator
- Annette Logan-Parker, Cures 4 The Kids Foundation, State Advocacy by a Patient Advocate or Organization
- Samantha Rose, Advocacy by a Youth or Teenager
- Carter Hemion, Diversity Empowerment
- Nell Choi, Artist-to-Advocate
View 2023 RARE Voice Awards recording
2022
- Aisling McDonough, Office of Representative Anna Eshoo, Federal Advocacy by Congressional Staff
- Jay Eberle, Office of Senator John Barrasso, Federal Advocacy by Congressional Staff
- Joni Rutter, Federal Agency Staff
- Amy Oliver, Federal Advocacy by a Patient Advocate or Organization
- Assemblymember Brian Maienschein of California, State Advocacy by a State Legislator
- Shannah Hudson, State Advocacy by a Patient Advocate
- Owen Maxfield and Claire Oliver, Teen Advocacy
- Leah Campbell, Diversity Empowerment
- Ali SP, Artist-to-Advocate
View 2022 RARE Voice Awards recording
2021
- Christina McCauley and Kirby Miller, Federal Advocacy – Congressional Staff
- Christine Brown, Federal Advocacy – Patient/Organization
- Delegate Sharon Cooper, State Advocacy – State Legislator
- Bob Graham , State Advocacy – Patient/Organization
- Hannah Yale, Federal or State Advocacy by a Teenager
- Sick Cells, Diversity Empowerment – Patient/Organization
- Alena Galan, Artist-to-Advocate
- Representative Frank Pallone Jr. and Senator Richard Burr, Congressional Leadership
- Dr. Francis Collins, Lifetime Achievement Award
View 2021 RARE Voice Awards recording
2020
- Stuart Portman, Federal Advocacy – Congressional Staff
- Caitlin Van Sant, , Federal Advocacy – Congressional Staff
- Kevin Koser , Federal Advocacy – Patient/Organization
- Kathleen Murphy , State Advocacy – State Legislator
- Jana Monaco, Virginia , State Advocacy – Patient/Organization
- Grant Bonebrake , Federal or State Advocacy by a Teenager
- Dona Krystosek, Artist-to-Advocate
- Senator Tammy Baldwin, WI, Congressional Leadership
- Representative Jaime Herrera Beutler, Congressional Leadership
2019
- Hon. Lucille Roybal- Allard, Congressional Leadership
- Hon Roger Wicker, Congressional Leadership
- Debbie Jessup, Congressional Staff
- Shayne Woods, Congressional Staff
- Isabel Bueso, Federal Advocacy
- Nikia Vaughan, State Advocacy
- Aidan Abbott, Teen Advocacy
- Dr. Emil Kakkis, Lifetime Achievement
Read more about the 2019 RARE Voice Awards
2018
- Hon. Cathy McMorris Rodgers, Congressional Leadership
- Hon. Jackie Speier, Congressional Leadership
- Thomas Rice, Congressional Staff
- Danielle Leach, Federal Agency
- Rob Bonta, State Legislator
- Angela Ramirez Holmes, State Advocacy
- Brian Maienschein, State Legislator
- Sadie Keller, Federal Teen Advocacy
2017
- Hon. Amy Klobuchar, Congressional Leadership
- Hon. Leonard Lance, Congressional Leadership
- Remy Brim , Congressional Staff
- Polly Webster, Congressional Staff
- Paul Fogelberg, Federal Patient Advocacy
- Darlene Shelton, State Patient Advocacy
- Becky Ruth, State Legislator
- Taylor Kane, State Teen Advocacy
- Emily Muller, Federal Teen Advocacy
- Shira Strongin, Federal Teen Advocacy
2016
- Hon. Joseph Crowley, Congressional Leadership
- Hon. Orrin Hatch, Congressional Leadership
- Grace Stunz ,Congressional Staff
- John Gallin, Federal Agency
- David Fajgenbaum, Federal Patient Advocacy
- Gina Szajnuk, State Patient Advocacy
- Sabrina Low-Dumond, State Patient Advocacy
- Richard Pan, State Legislator
- Ronald Bartek, Lifetime Achievement
- Hon. Orrin Hatch, Lifetime Achievement
2015
- Hon. Gus Bilirakis, Congressional Leadership
- Hon. GK Butterfield, Congressional Leadership
- Hon. Diana DeGette, Congressional Leadership
- Saul Hernandez, Congressional Staff
- Clay Alspach, Congressional Staff
- Patricia Weltin, State Patient Advocacy
- Stephen Groft, Federal Agency
- Lisa & Max Schill, Federal Patient Advocacy
- Hon. Fred Upton, Lifetime Achievement
2014
- Hon, Doris Matsui, Congressional Leadership
- Cheryl Jaeger, Congressional Staff
- William A. Gahl, Lifetime Achievement
- Allen E. Guttmacher, Federal Agency
- Gabriella Miller, Federal Patient Advocacy
- National Down Syndrome Society, Federal Patient Advocacy
- Jeff Leider, State Patient Advocacy
- Jonny Lee Miller, Special Presentation/Patient Advocate
2013
- Hon. Michael Burgees, Congressional Leadership
- Hon, Ileana Ros-Lehtinen, Congressional Leadership
- Hon. David McKinley, Congressional Leadership
- Art Estopinan, Congressional Staff
- Janet Woodcock, Federal Agency
- John F. Crowley, Special Presentation/Patient Advocate
- Patricia Furlong, Lifetime Achievement
2012
- Hon. Michael McCall, Congressional Leadership
- Hon. Cliff Stearns, Congressional Leadership
- Thomas Power, Congressional Staff
- Emily Shetty, Congressional Staff
- Andy Taylor, Congressional Staff
- Nancy Goodman, Federal Patient Advocacy
- Roy Zeighami, Federal Patient Advocacy
- Mark Dant, Special Presentation/Patient Advocate
- Abbey Meyers, Lifetime Achievement
