From the Every Life Foundation website.

The Spring 2026 seminar series, entitled “The Intersection of State and Federal Policy for Rare Disease Advocacy”, will empower advocates to engage meaningfully in impactful policy change.

Weekly seminars will be 1.5 hours in length and offered in a mix of live and recorded formats between April 20 and June 5. The live seminars will include small breakout sessions. An optional orientation will be held on April 16 from 3:30 to 4:30 pm ET. Participants who complete all five seminars and present a final project will be awarded a certificate of completion.

RAL+ Cohort

A program called RAL+ is available to a select group of Rare Advocacy Learning participants. RAL+ is for advocates from diverse backgrounds dedicated to serving under-resourced communities. The 2026 RAL+ cohort has an emphasis on the rural rare disease population. Sessions include education and discussions on advocacy and policy related to rural communities. RAL+ requires meeting via Zoom every Thursday from April 23rd to May 21st at 5pm ET.

In addition to the core course sessions, the RAL+ cohort will meet for an additional seminar per week for 1-2 hours, with a mix of live and recorded sessions. Live sessions will be on Thursdays at 5 pm ET.

For more details and advocacy learning opportunities CLICK HERE 

New Program Will Help Improve Patient Access to Care

Adapted from the DI website,  January 2026.

In December the Dysautonomia International association launched the first Dysautonomia International Autonomic Disorders Fellowship, a one-year advanced clinical training program designed to prepare physicians to become expert leaders in autonomic nervous system disorders. The fellowship curriculum was designed with the needs of our patient community in mind. Upon completion of the program, fellows will be prepared to lead new dysautonomia clinics, advance research, and contribute to improving care for millions of people living with dysautonomia.

The inaugural fellowship, with funding to support one fellow per year for the next three years, will be hosted at the University of Toledo Medical Center, under the supervision of internationally renowned dysautonomia specialist Dr. Blair Grubb, Distinguished University Professor of Medicine and Pediatrics and Director of the Syncope and Autonomic Disorders Clinic at the University of Toledo. 

Autonomic disorders impact over 70 million people around the world. Yet despite the high prevalence, there remains a severe shortage of clinicians trained to diagnose and treat these conditions. Globally, there are fewer than 75 physicians board-certified in autonomic disorders, and only five medical schools offer autonomic fellowship programs. This fellowship program is a significant step in addressing that shortage of expert care. 

The Dysautonomia International Autonomic Disorders Fellowship will provide comprehensive training in the diagnosis and treatment of postural orthostatic tachycardia syndrome, neurocardiogenic syncope, autonomic small fiber neuropathies, pure autonomic failure, and many other autonomic disorders. The fellows will also learn about many diseases associated with dysautonomia such as Sjogren’s, Parkinson’s, Ehlers-Danlos syndrome, long COVID, and mast cell activation syndrome, to name just a few.

“This fellowship fills a critical training gap,” notes Dr. Grubb. “We’re excited to partner with Dysautonomia International to mentor the next generation of physicians committed to advancing autonomic medicine.”

To learn more and possibly support this work click here  

Survey will help study mental health needs for rare patients in US & UK

A new survey has been released to study the mental health needs of people with rare diseases, and patients with all rare diseases from the United States and United Kingdom are welcome to try it.

The survey is the brainchild of Frank Rivera, a patient with Stronger Than Sarcoidosis, a Long Island based support group for people with sarcoidosis. Frank has been active in the rare community for years, and saw the need for a patient driven/patient facing survey on the often understudied and mental health needs of people with rare diseases like sarcoidosis. 

To design and run the survey, Frank has teamed with Unboxed Psychology, a behavior science consulting firm based in the United Kingdom. Together they've produced a basic needs assessment survey people can answer online in about 10 minutes. While participants agree to provide basic information, participant confidentiality is secured and the data is only seen by Stronger Than Sarcoidosis and Unboxed Psychology.

According to Frank, patients need more opportunities to be heard by their support organizations about their mental health needs. "One thing I really want to do with the results is turn it into a white paper to show the patient organizations some of the unmet needs and where they have an opportunity to help more." 

The survey can be accessed through the QR code shown here or this survey link. 

If you have questions you can also contact Frank Rivera at fjr311@gmail.com