{"id":290731,"date":"2026-05-28T11:44:58","date_gmt":"2026-05-28T15:44:58","guid":{"rendered":"https:\/\/rarediseases.org\/?p=290731"},"modified":"2026-05-28T17:04:08","modified_gmt":"2026-05-28T21:04:08","slug":"recap-nord-living-rare-living-stronger-in-colorado","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/recap-nord-living-rare-living-stronger-in-colorado\/","title":{"rendered":"Recap: NORD Living Rare, Living Stronger in Colorado"},"content":{"rendered":"

For years, the National Organization for Rare Disorders (NORD\u00ae<\/sup>) Living Rare, Living Stronger\u00ae<\/sup><\/a> (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<\/a>, then hit the road to get to Denver, Colorado to host our second forum of the year just one week later on May 15.<\/p>\n

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\u2019 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\u2019s Running for Rare\u00ae<\/sup><\/a> team had runners in the 10-miler and half-marathon!<\/p>\n

\"Rare
Rare caregivers Brian & Audra ran the Colfax 10-miler! Their three boys were the stars of our cheer section.<\/figcaption><\/figure>\n

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\u2019s 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.<\/p>\n

\"Lily
Lily Emmanuel, 2026 NORD Rare Impact Award honoree<\/figcaption><\/figure>\n

Improving Your Rare Disease Care<\/h2>\n

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 \u201cInnovative Approaches to Improving Your Rare Disease Care\u201d 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<\/a> at the University of Colorado Anschutz Medical Campus and Children\u2019s Hospital Colorado.<\/p>\n