Latest from the Hub

The Child Neurology Foundation (CNF) wants to hear from parents and caregivers of children and adults with neurologic conditions! This anonymous, 10-minute Caregiver Needs Assessment will help CNF better understand family needs and shape future programs and resources. Participants are automatically entered for a chance to win a free SAMi camera or Mightier device.

Join Autism Oklahoma and the Social Security Administration for a free virtual presentation covering the basics of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Learn about disability benefits, eligibility requirements, the application process, reporting responsibilities, and available online services.

This webinar is a helpful opportunity for individuals with disabilities, families, and caregivers to better understand Social Security benefits and available supports.

Registration required. Visit the event page for details and registration.

Join RARE Advocates for a webinar this month. Attendees will hear a panel discussion on the FDA's new framework initiative.

On October 28, 2026, the U.S. Food and Drug Administration, in partnership with the Reagan-Udall Foundation for the FDA, will convene a hybrid public meeting to seek input related to the FDA’s Rare Disease Framework Initiative to reimagine the agency’s approach to rare disease drug development.

Ambry Genetics, a leader in clinical genomic testing and a wholly owned subsidiary of Tempus AI, Inc., announced the launch of GenomeNext™ and GenomeReveal™, a comprehensive whole genome sequencing (WGS) solution designed to help improve diagnosis of patients with rare diseases.

The National Academies will organize and conduct a public workshop to examine the role of genetic testing, from preconception through early childhood, on the health of children. The overarching goal of the workshop is to explore how genetic screening and diagnostic testing are currently applied from preconception through early childhood; to identify gaps and redundancies across these stages; and to consider how advances in technology, policy, and clinical practice could support a more integrated approach to genetic testing over time.

The Oklahoma Rare Disease Coalition brings together patients, families, healthcare professionals, researchers, advocates, policymakers, industry partners, and organizations to strengthen our rare disease community, elevate rare voices, and work toward meaningful change across Oklahoma.

Global Genes RARE Concierge offers free support to help rare and undiagnosed patients and families navigate resources, diagnosis, genetic testing, specialists, research and more.

RareEDU® is NORD’s free online learning platform for the rare disease community and those who want to learn, advocate, and contribute to progress in rare disease. Explore self-paced education designed for people living with rare diseases and their families, patient advocates and organizations, students and trainees, and others interested in building their knowledge and skills.

The Chronic Disease Coalition’s Voting Resources page provides nonpartisan information to help the chronic disease community understand policy issues on the November ballot and make informed voting decisions.

Join Team Oklahoma in DC! RARE Foundation travel reimbursement applications are open to help offset costs for attending RARE Disease Week in Washington, DC, March 2–4, 2027.

Learn about the Newborn Screening policy space with the Rare Foundation 101 video.