One Rare Board

Jenn is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Her work in the rare disease space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, a nomination for the Global Genes Champion of Hope award in 2014, and the prestigious 2017 Meyer- Whalley instrument of change award. Formerly as the director of outreach and advocacy at a Massachusetts based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 Duchenne Muscular Dystrophy (DMD) advocates, families, clinicians and researchers in attendance.  There are currently only two drugs approved for DMD, Exondys51 and Emflaza, though in various roles, Jenn was involved in the approval process for both. Currently, Jenn is consulting in the biotechnology space with a focus on caregiver & patient engagement.

With more than 30 years of expertise in the clinical research industry, Joan has implemented a variety of

senior leadership strategies and functions within the organizations she has worked for. She is a

seasoned executive with strong leadership skills in team management, strategic business and financial

planning, integrated marketing, communications, and educational initiatives.

Joan presently holds positions of responsibility across various esteemed organizations in the

pharmaceutical industry. She is an active member of the Executive Steering Committee for the

PharmaTimes Clinical Researcher of the Year program, serves on the Advisory Board of the

Pharmaceutical Business Conference Group (PBC Group), and contributes her expertise as a respected

judge in the Citeline Awards annual event. Additionally, she has contributed her leadership and insights

as a board member for Greater Gift, Biobridges, and CISCRP.

Richie is a health policy professional by training, clinical researcher by trade, and patient advisor by necessity. Richie is intensely passionate about reducing the time it takes to bring promising new therapeutics and diagnostics to market. Over the last 12 years, he has tackled this challenge head on at health technology companies, contract research organizations, and clinical research sites. In his current role, Richie serves as Senior Director of Patient Success at Medable, laser focused on the patient experience. A clinical trial participant himself as well as a rare disease patient impacted by Wolfram-like syndrome, he joined One Rare to better support young adults impacted by rare disease.  

Levi, a 29-year old from South Central, PA. Impacted by Idiopathic Intracranial Hypertension, Behcet’s Disease, and Parkinson’s, has undergone 10 major brain surgeries since their initial diagnosis in 2016. As a former Firefighter/EMT, Levi gained invaluable firsthand knowledge of the healthcare system. This clinical and practical knowledge was instrumental to diagnosing her own conditions when doctors fell short, and also professionally assisting patients with the arduous task of navigating the healthcare system in the present day. Being legally blind herself, Levi is very passionate about accessibility and inclusion for young adults who are often treated as an afterthought by society. As a Board Member for One Rare, she strives to ensure that all young adults have access to the most beautiful things life has to offer; fun, friendship, and the spirit of adventure. In her free time, she enjoys both casual and competitive eSports, and collecting Pokémon cards. 

James is a young but eager voice in the rare disease community. He is a Patient advocate and a full time college student. His focus is in patient rights (especially in marginalized communities) and making sure all voices are heard. James is an aspiring engineer and social activist.

He loves spending days walking through his home city of Boston and spends most of his time in his garden with his very energetic dog Stella.

Kyle is an educator, advocate, community builder, and storyteller whose work is shaped by lived experience and a deep commitment to accessibility and equity. Living with multiple rare diagnoses, they began advocating for accessibility while in college and have continued to cultivate spaces where people feel seen, supported, and empowered.
As an educator, Kyle is passionate about working with young people and creating environments that encourage growth, leadership, and belonging. They bring this same spirit into their community work, emphasizing collaboration, creativity, and connection as tools for change. Through writing and photography, Kyle shares stories that are too often overlooked, using creative expression to deepen understanding and highlight the strength of collective experience.

Kelly Berger is a fierce rare disease and disability advocate from Cincinnati, Ohio, who lives with congenital muscular dystrophy (CMD). Her passionate advocacy work has received considerable recognition, winning a 2024 RareVoice Award and a 2024 RARE Champion of Hope Nomination. She devotes her time to amplifying the needs of the disability community and is constantly championing inclusion in all facets of life. Mentoring young adults living with similar neuromuscular disease is a cause that’s close to her heart and provides her with great joy. She adores live music and is always attending a concert, typically driving states away to see her favorites. Kelly utilizes her adapted mobility van as her means of independence, fueling her thirst for constant travel adventure — she’s explored over 40 states and counting.

 very Roberts is a rare disease and disability advocate and speaker, as well as an accessibility and inclusion champion. Living with congenital muscular dystrophy (CMD), she has dedicated her life's work to raising her voice, challenging stereotypes and the status quo, enacting real change, and promoting inclusion done right in society. Avery partners with numerous patient advocacy organizations in the rare disease space. Through her advocacy work, she puts a face to rare disease on Capitol Hill and advocates to legislators at the federal and state levels to ensure public policy reflects the needs of the rare disease community. A part of a professional dance company in NYC, Avery is passionate about authentic disability representation in the entertainment industry and media. She has danced at the most well-known theaters in NYC and was the first wheelchair user to dance on the great stage of the world-renowned Radio City Music Hall.