For years, the National Organization for Rare Disorders (NORD®) Living Rare, Living Stronger® (LRLS) Patient & Family Forum has convened rare disease patients, families, caregivers, and experts to forge lasting connections. We kicked off our 2026 LRLS programming on May 8 in Phoenix, Arizona, then hit the road to get to Denver, Colorado to host our second forum of the year just one week later on May 15.
Over 115 Colorado-based rare patients, family members, clinicians, and allies joined us for a day of learning, connecting, and exploring local resources. The event was held in downtown Denver at the Auraria Campus’ historic Tivoli Turnhalle, a beautiful 19th century structure with red brick walls, vaulted ceilings, and original hardwood floors. Our Colorado Forum coincided with the Denver Colfax Marathon weekend, and NORD’s Running for Rare® team had runners in the 10-miler and half-marathon!
Our Running for Rare Colfax team has been cultivated by 2026 NORD Rare Impact Award honoree, Lily Emmanuel. We had the privilege of recognizing Lily’s impact on the rare disease community at our Denver Living Rare Forum in her hometown! Lily was also our keynote speaker and emphasized the important role that peer-to-peer support and connection can play while living with a rare disease.
Improving Your Rare Disease Care
Attendees in Colorado heard from leading clinical experts in their state about the groundbreaking work being done to improve rare disease diagnostics, care, research, and treatment during our “Innovative Approaches to Improving Your Rare Disease Care” educational session. The panel was led by Marybeth McAfee, Vice President of Community & Corporate Affairs at NORD, who brought professional expertise and personal perspective through her background as a genetic counselor, and included three doctors from our NORD Rare Disease Center of Excellence at the University of Colorado Anschutz Medical Campus and Children’s Hospital Colorado.
- Dr. Megan Abbott highlighted the transformative impact of multidisciplinary clinics and the meaningful improvements they are bringing to patient care.
- Dr. Alisa Gaskell described genetics as “a discovery engine” emphasizing how every patient’s sequencing contributes to unlocking a better understanding of rare disease.
- Dr. Meg Macy shared important advancements emerging in the rare cancer space and encouraged attendees to build a care team of clinicians that are willing to talk to other people and learn. She told the audience that she’s never afraid to say, “I don’t know” because “…the worst thing we can do as providers is think we have all the answers.”
- Lianne McLean, RN, BN, MN, offered a valuable perspective on advocacy, collaboration, and improving systems to better serve the rare disease community.
Navigating the World of Insurance
Our second panel, “Overcoming Insurance Barriers” was an area of need identified by our local planning committee that helped design the event. Tiffany Sammons, Community Engagement Manager at NORD and rare caregiver, facilitated the discussion and was joined by Dr. Kavita Nair, also from the NORD Rare Disease Center of Excellence at University of Colorado Anschutz Medical Campus, who provided practical tips for understanding complex insurance terminology and navigating the system. Dr. Nair encouraged attendees to be persistent when it comes to navigating insurance. She said, “A denial is not the end all be all. It’s simply a roadblock or fork in the road. Let’s talk about how to pivot to get to your destination.” Nick Kirchhof, rare caregiver and former NORD Rare Action Network Ambassador for Colorado, spoke about his experiences navigating insurance as a caregiver and shared tips he has learned along the way that have made things easier for his family.
Getting Connected to Local Resources and Services
We had nine fantastic exhibitors that shared information with attendees about the resources and services they provide for the rare disease community.
The Colorado Rare Disease Advisory Council (RDAC) discussed their work and the needs of Colorado’s rare community directly with patients and families.
We met a HopeKids volunteer at our Arizona Living Rare Forum on May 8 and he worked fast to connect us to his peers at the Colorado HopeKids chapter who were able to join us in person! HopeKids provides ongoing events, activities, and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We are so grateful to volunteers across the country for supporting the rare disease community!
The Bloom Syndrome Association exhibit was a family affair! Rare caregiver and Bloom Syndrome Association volunteer, Ben (far right, pictured below next to family members), was an integral part of our planning committee for this event. We would not have been successful without the vital support of local rare families, clinicians, and allies that guided us throughout all stages of planning to design an event tailored to meet the needs of the rare community in the area.
Thank you to everyone who joined us in Denver and to our sponsors who made this event possible!
Our next Living Rare, Living Stronger Patient & Family Forum will be held in Florida later this year. We will also be hosting a virtual series over the summer and a virtual program completely in Spanish in October. Follow NORD on social media or subscribe to our emails for updates.
