Colorado Rare Disease Fair

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Colorado Rare Disease Fair

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The Colorado Rare Disease Fair is an annual event that brings stakeholders together to solve problems

09/23/2026

Register now for this free event!

Come connect with providers, community members, and industry stakeholders in this free 2 day event!

Colorado Rare Disease Research Day is October 12th and Colorado Rare Disease Fair is October 13th.

Register here: https://rarediseasefair.org/

09/21/2026

Come to the Colorado Rare Disease Fair on October 13th and learn about how Colorado’s Boards and Councils can be a resource for the community!

We are welcoming Sarah Grazier, with the Colorado Developmental Disabilities Council!

Register now! https://rarediseasefair.org/

Sarah Grazier serves as Executive Director of the Colorado Developmental Disabilities Council.

The Council provides education, grants, advocacy and systems change, led by, with and for
individuals with developmental disabilities and their families. Sarah is recognized for her ability
to align people, systems, and strategy to achieve measurable impact.

Sarah has successfully led large-scale initiatives in disability inclusion, maternal and child
health, affordable housing, and behavioral health. She has directed multimillion-dollar budgets, secured significant philanthropic and federal funding, and built cross-sector coalitions that
advance equity and community well-being. Sarah is known for her collaborative leadership,
strategic vision, and commitment to building inclusive communities.
Sarah has worked with people with disabilities since high school but it was the birth of her first
daughter in 2013 that led her into advocacy. She draws inspiration from the connectedness of all
things, project timelines and spreadsheets, interesting concepts and ordinary people doing extraordinary thing

09/18/2026

We can’t wait to welcome Chelsea Hardesty as a panelist! Her exciting work in the endometriosis space will surely help to inspire others.

Chelsea Hardesty is an advocate, researcher, educator, and creative strategist working at the intersection of healthcare, policy, research, and lived experience. She is the Founder and President of Getting the Better of Endometriosis, Advocacy Education Director and Government Relations Delegate with the American End of Endo Project,
CEO and Gallery Curator of SATIREV USA, and a Research Assistant and Patient Advocate with EndoMarch.

Her work focuses on advancing systemic change in how endometriosis and other
chronic illnesses are understood, researched, and addressed. Through congressional outreach, public education, collaborative research initiatives, national advocacy campaigns, and multidisciplinary arts projects, she works to elevate patient voices as a valuable form of evidence within healthcare and policy conversations.
Chelsea has contributed to federal advocacy efforts advancing language that recognizes endometriosis as a chronic, systemic inflammatory disease, helping bridge the gap between emerging science, patient experience, and public policy. Her work spans community engagement, conference presentations, advocacy training, patient-led research, and large-scale storytelling initiatives that amplify lived experience and foster meaningful collaboration.

Be sure to register now! https://rarediseasefair.org/

09/15/2026

Welcome Dawn Gano to the Colorado Rare Disease Research Day.

Register here: https://rarediseasefair.org/

Dawn Gano, MD MAS FRCPC, is a Professor of Pediatrics and Head of the Division of Neurology at BC Children’s Hospital and
the University of British Columbuia (UBC). She is a clinician-scientist focused on fetal and neonatal neurology with a goal of advancing brain health across the lifecycle. She obtained her undergraduate degree from McGill University, and studied medicine at McMaster University. She trained as a pediatric
neurologist at UBC and completed her fellowship in neonatal neurology, and Masters in clinical research methods at the University of California, San
Francisco (UCSF). At UCSF, Dr. Gano was the inaugural Director of the Fetal Neurology Center of Excellenc

09/14/2026

We are so excited about Dr. Jennifer Cohen who will speak about in utero treatments for rare diseases!

Register here: https://rarediseasefair.org/

Jennifer L. Cohen, MD is an Associate Professor of Pediatrics in the Division of Medical Genetics at Duke University. She has joint appointments in the Department of Obstetrics & Gynecology and the Department of Molecular Genetics and Microbiology. She attended Yale College and then received her MD from the Icahn School of Medicine at Mount Sinai in NYC. She completed a combined residency program at the Children’s Hospital of Philadelphia in Pediatrics and Medical Genetics, before joining the faculty at Duke in 2019. Her research interests and expertise are in perinatal genetic medicine with a current focus on earlier diagnosis and perinatal intervention for rare genetic diseases. She is actively involved in gene therapy trials for lysosomal storage diseases and has been integral to the success of the ongoing clinical trial for prenatal treatment of lysosomal storage diseases; she serves as the Duke subcontract Principal Investigator on this trial. Dr. Cohen’s current work aims to leverage public health genomics for the early and equitable delivery of gene-directed therapies to patients with treatable genetic conditions. Dr. Cohen continues to develop prenatal clinical trials and novel methods to diagnose and treat genetic diseases before birth.

09/11/2026

Join us in welcoming Chris Stafford who will share his caregiver journey as a father with PURA Syndrome!

Register here: https://rarediseasefair.org/

Chris Stafford lives with his family in Denver, Colorado. He and his wife, Megan, are the parents of one girl and two boys, including their 17-year-old daughter, Lily, who was diagnosed with PURA Syndrome in 2023.

He is a devoted dad and partner and enjoys spending time with his family, being outdoors, and doing household DIY projects. He is active in the local special needs community and enjoys meeting and mentoring families on their own special needs journey. He also enjoys volunteering with the PURA Syndrome Foundation.
He has a Master’s Degree in Organizational Leadership and works in the healthcare industry focusing on team development, technology implementation, project management, and operations.

09/07/2026

We are excited to hear from Michael Steinberg at the Colorado Rare Disease Fair, October 13th!

Register here: https://rarediseasefair.org/

Michael Steinberg has a background in mechanical engineering and construction and has been a volunteer with May We Help, a non-profit 501c3 organization, for the last 4 years. He’s designed and built a wide variety of assistive devices for disabled children both in the Denver metro area and in Cincinnati where May We Help is based. Michael enjoys working with children and their caregivers to create solutions that are not available in the marketplace. These custom devices improve children’s lives, empowering them to achieve independence and pursue their full potential by providing the tools they need to thrive.

09/04/2026

Navigating insurance can be a daunting task. That’s why we are hosting Kavita Nair, PhD, FAAN to come and give ideas on how to tackle insurance!

She will be at the Colorado Rare Disease Fair October 13th! Register now to hold your spot! https://rarediseasefair.org/

I’m a clinical researcher and patient-centered outcomes investigator working in neurology and rare disease spaces through research, leadership via the American Academy of Neurology and direct patient and provider engagement in payer related issues.. Much of my work focuses on understanding barriers patients face when trying to access diagnostics, specialty care, and emerging therapies. I also work closely with families navigating complex insurance systems, particularly around genetic testing, biomarker testing, specialty medications, and multidisciplinary care coordination. My perspective is both systems-focused and patient-focused—I spend a lot of time looking at where policy and real-world patient experiences collide.”

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Denver, CO

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https://rarediseasefair.org/#colorado

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