From the Every Life Foundation website.

Are you someone who:

✔ Benefits from 1:1 coaching?

✔ Wants guidance to expand your advocacy?

✔ Desires extra support in building your advocacy skills?

Apply now to be a part of the RDLA Advocacy Mentorship Program!

The purpose of the RDLA Advocacy Mentorship Program is to create a year-round support system for advocates who are seeking more 1:1 support in their advocacy development and to foster a continued role for experienced advocates to hone their leadership skills.

Mentors and mentees will be offered basic guidance and are required to meet virtually at least quarterly throughout the year. The mentor will provide 1:1 support for one year and support individuals in various advocacy skill building opportunities such as pre- and post-event support for Rare Across America and Rare Disease Week, help develop their storytelling, or other established goals. 

 Advocates with any level of advocacy experience can apply for the program. The mentors are outstanding patient and caregiver community members who have a leadership background and experience in legislative advocacy and are matched with selected mentees. Mentors have participated in Rare Across America and/or Rare Disease Week on Capitol Hill and are well-versed in building relationships with legislators.

If you have any questions, please contact Kendly Jones at kjones@everylifefoundation.org. 

For more details and advocacy learning opportunities CLICK HERE 

APPLICATION DEADLINE IS MAY 15

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  

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