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RAR Stacked-1

Amplifying voices of those battling rare diseases

Rare Awareness Radio is a non-profit collaborative between Meeting You Podcast and Principled Research Resources, with support from The OMSLife Foundation. Here, we feature unique perspectives from patients, caregivers, healthcare providers, researchers, and advocates. Through candid conversations and personal stories, we hear lessons learned, successes, and challenges to address.

Caregiver Series

Chanin Zaragoza and her son Zeke share their experiences overcoming Zeke's OMAS diagnosis at 36 months old. Zeke endured a challenging four-year period marked by aggressive, painful therapies, physical, and occupational treatments. By the age of seven, he achieved remission and had remastered the motor functions lost abruptly as a toddler.

EP(C)7: Chanin & Zeke Zaragoza & Their OMAS Journey

Founder Series

Adam Clatworthy is a co-founder of CRELD1 Warriors, a UK-based charity supporting families affected by the ultra-rare genetic condition CRELD1. In this episode, Adam shares his deeply personal journey navigating his children's diagnoses, building a global community, and advocating for awareness and research. Learn how one family's determination creates a lifeline for others in the rare disease community. For more information, please visit https://www.creld1.com/

EP(F)6: Adam Clatworthy & Creld1 Warriors

Founder Series

Kate Vinokurov is the founder of Cure OTCD, a nonprofit organization dedicated to finding a cure for ornithine transcarbamylase deficiency (OTCD), a rare urea cycle disorder. Kate’s journey began when her son, Etan, was diagnosed with this life-altering condition shortly after birth. Determined to improve his quality of life and that of others affected by OTCD, Kate transformed her personal challenges into a mission to drive change. Through CureOTCD, Kate focuses on advancing critical research, raising awareness, and fostering patient advocacy. To learn more, please visit cureotcd.com.

EP(F)5: Kate Vinokurov & CureOTCD

Founder Series

Jill Hawkins is founder and president of The FAM177A1 Research Fund, a nonprofit organization created to accelerate the development of treatments for the nano-rare genetic disease FAM177A1 disorder, that affects two of her children. Jill oversees the fund's operations, fundraising, and partnerships, working with researchers, clinicians, biotech companies, and other rare disease stakeholders. She also shares her family's journey and raises awareness about FAM177A1 Disorder through various podcasts, panels, and publications. To learn more, please visit https://www.curefam.org.

EP(F)4: Jill Hawkins & The FAM177A1 Research Fund

Founder Series

Carolina Sommer is the CEO and founder of the Born A Hero Research Foundation and co-founder of the Northwest Rare Disease Coalition. A dedicated advocate, author, and lobbyist, Carolina’s journey in the rare disease community began with her daughter’s diagnosis of Pfeiffer syndrome. She has since become a leading voice for rare disease awareness, passionately working to support families and drive forward meaningful change through community-focused initiatives, patient-led research, and policy advocacy. For additional information, please visit bornahero.org.

EP(F)3: Carolina Sommer & The Born a Hero Foundation

Founder Series

Jeffrey T. Kramer, M.S. created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. He combines his 24 years experience in substance abuse counseling, communication, and marketing with his experience in broadcasting to produce film and videos. In addition, Jeffrey has been a certified Emergency Medical Technician and a Volunteer Firefighter for the Prince George’s County Fire Department. Mr. Kramer operates his own multimedia production company called Kramer Communications. For more information, please visit csfshayna.org.

EP(F)2: Jeff Kramer & The Chondrosarcoma Foundation

Founder Series

Mike Michaelis, founder and president of The OMSLife Foundation, established the organization in 2009 after his granddaughter's OMS diagnosis. The foundation aims to support patients and caregivers, raise OMS awareness, and fund research. Their OMS Patient Reported Natural History Study, developed in collaboration with NORD and funded by the FDA, currently has nearly 400 registrants. Mike is dedicated to connecting patients with top care providers and has expressed gratitude for interacting with numerous OMS patients, families, specialists, and researchers globally. For more information, visit omslifefoundation.org.

EP(F)1: Michael Michaelis & The OMSLife Foundation