About this Event
Arizona Rare Disease Outdoor Event – Coconino County 2026
Join us Monday, September 28, 2026 | 5:00–7:00 PM at Columbine at Raymond County Park, 3305 Kachina Trail, Flagstaff, Arizona for a free, family-friendly outdoor wellness evening designed especially for the rare disease, chronic pain, and rural Arizona community.
This accessible outdoor gathering features information on whole-genome sequencing for rare disease diagnosis and healthy eating on a budget, tips on managing pain through movement and nature, open-house naturopathic/wellness stations, and dedicated Q&A opportunities.
Resource tables with practical tools, guides, and support materials stay open throughout so everyone, including those with limited mobility, can participate at their own pace.
All activities emphasize inclusivity, shade/rest areas, short distances, comfortable seating options, and adaptive accessibility. Light healthy snacks and hydration will be provided.
The entire event is free and open to the public, patients, caregivers, families, and community members are all welcome.
Hosted by iPain as part of its Rural Rare Disease Project with a grant provided by the EveryLife Foundation and Power of Pain Foundation, Inc., this is your chance to connect, learn practical strategies, enjoy the Flagstaff outdoors, ask questions, and leave with resources you can use right away.
RSVP today to help us plan for you (not required). We can’t wait to see you under the northern Arizona sky! Questions - 480-760-1197 [email protected]
Agenda
🕑: 05:00 PM - 05:10 PM
Opening remarks
Host: Ken and Barby
🕑: 05:10 PM - 05:30 PM
Open Q&A on Rural Resources for rare and chronic illnesses
🕑: 05:30 PM - 06:00 PM
Whole Genome Sequencing for Rare Disease Diagnosis
Host: Barby Ingle, BSc
Info: Whole Genome Sequencing for Rare Disease Diagnosis - Presented by Barby Ingle, BSc – Vice President, International Pain Foundation (iPain); rare disease patient advocate, best-selling author, and chronic pain educator. In this 30–35 minute talk followed by Q&A, Barby Ingle demystifies whole genome sequencing and explains how this powerful diagnostic tool is transforming the journey for people living with rare and undiagnosed conditions. Drawing on her own lived experience and years of advocacy, she covers when and why sequencing can provide answers, what patients and families should know before testing, how results can open doors to better care and community support, and practical next steps available right here in Arizona. Attendees will leave with clearer understanding, realistic expectations, and renewed hope that answers, and a path forward, are increasingly within reach.
🕑: 06:00 PM - 06:30 PM
Caregiving for rare disease and chronic pain patients
Host: Ken Taylor
Info: Caregiving for rare disease and chronic pain patients (especially in rural settings)
He is a longtime caregiver for his wife Barby Ingle (who lives with RSD/CRPS and multiple other conditions). He frequently speaks and writes from the caregiver perspective—practical strategies, emotional resilience, navigating the health system, and supporting the whole family. This aligns perfectly with a family-friendly, inclusive rare-disease event.
🕑: 06:30 PM - 06:50 PM
Open Discussion from Attendees - Living Rare
🕑: 06:50 PM - 07:00 PM
Closing remarks
Host: Ken and Barby
Info: Thank-you's, info on future events, optional group photo.
Event venue & nearby stays
Raymond County Park, 3305 Kachina Trail, Flagstaff, United States
Concerts, fests, parties, meetups — all the happenings, one place.