Since 2019, the National Organization for Rare Disorders (NORD®) Living Rare, Living Stronger® Patient & Family Forum has convened rare disease patients, families, caregivers, and experts to form lasting, impactful connections. This year, we are hosting three forums tailored to the rare community in each state where the events are being held.
We kicked off the first of our 2026 Living Rare, Living Stronger forums on May 8 at Grand Canyon University in Phoenix, Arizona, where more than 115 rare patients, family members, clinicians, and allies gathered for a day of learning and relationship building.
Improving Your Rare Disease Care
Living Rare, Living Stronger is about providing our community with resources and connections that will help improve their experience navigating life with a rare disease. At NORD, we are guided by the belief that “Alone we are rare. Together we are strong.”® Our first panel of the day, “Innovative Approaches to Improving Your Rare Disease Care” discussed opportunities for patients, clinicians, and researchers to collaborate and move the needle for the entire community.
- Stephanie Rankin, rare caregiver, encouraged newly diagnosed families to breathe, build your support system, and continue living life as fully as possible.
- Dr. Taejeong (TJ) Song discussed his research at the University of Arizona College of Medicine, and provided recommendations on how patients and families can get involved in rare disease research.
- Dr. Vinodh Narayanan recommended that families find their “go-to” doctor – the key person who can drive care coordination, help find answers, and recommend the right specialists.
Getting Connected to Local Resources and Services
Our second panel, “Tips for Accessing the Resources and Services You Need” was an area of need identified by our local planning committee that helped design this event. The panel was comprised of genetic counselors and a mental health professional serving the Arizona rare disease community, and a rare caregiver. Panelists provided information on practical resources ways that Arizonians can locate services and support available in their community and online.
- Taylor Vaughn, MS, CGC, moderated the panel and discussed clinical genetics care provided by Phoenix Children’s Hospital.
- Melissa Meyer, DNP, PMHNP-BC, shared tips for identifying and accessing mental health services from professionals in Arizona that have expertise in rare disease and chronic illness.
- Tabby Wallace, rare caregiver, encouraged the audience to advocate for their rare loved ones and be persistent when working to secure critically needed resources like medical equipment and other services.
- Keri Ramsey, MS, CGC, RN, shared insight on genetic services available for adult populations in Arizona, specifically through her lens as a genetic counselor in the Department of Clinical Genomics at Mayo Clinic, a NORD Rare Disease Center of Excellence.
For information on free or low-cost programs and services for people impacted by rare disease, explore NORD’s free Arizona State Resource Center. The State Resource Center contains information on programs and services spanning 12 different categories such as insurance navigation, education, mental health, and more.
Special thank you to all our sponsors whose support made this event possible.
Our next in-person Living Rare, Living Stronger forum will take place in Florida on Saturday, November 7. Registration will open in August. 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 for updates!
