CSRF E-NEWSLETTER BIMONTHLY UPDATES MAY-JUNE 2025
A patient registry is a secure platform that collects data on a group of patients defined by a particular condition. They support research, improve quality of care, inform public health, and guide policy. High-volume academic hospitals have internal registries comprised of their patient list and clinical data related to their treatment. Physicians will often use this data to write articles to share within the scientific community, but the lack of patient input can limit the scope of understanding, especially on issues related to quality of life, elements of well-being, new diagnoses after “cure” or remission, and long-term health. Become a Research Partner, Step One: Join a Registry!
In the US, our ability to build a unique, validated, IRB-controlled registry “by and for the people” rests on a network of rare disease advocates and educational funding that does not exist anywhere else quite like this. Leading the pack is NORD (National Organization for Rare Disorders), builders of the IAMRARE registry platform we are using. NORD has listened for more than a decade to IAMRARE users and consistently offers friendly “how to” videos, webinars, and documents. If you would like a 101 on joining a registry, what it looks like once inside, how consent is handled, and lots of other details, please consider joining their webinar on June 12 at 4:00pm EST entitled Community Conversation:The Living Rare Study. For more information or to register: https://rarediseases.org/event/community- conversation-the-living-rare-study/
ERCUSYN.EU
Europe has ERCUSYN, the European Register on Cushing’s Syndrome. CSRF Medical Advisory Board member Dr. Elena Valassi is a key team member at ERCUSYN and motivated us several years ago when she said universal healthcare systems helped grow the registry but that the ability to include patient-reported data would allow for so many more avenues to explore. There could be a future where our registries work together to tell more of the story for our European peers!
May 10-13 in Copenhagen, Denmark was a great place to be if you were looking for new research, unusual studies, and promising discoveries about or related to hypercortisolism. President Leslie Edwin was joined by CSRF Secretary and Pediatrics Lead Meg Keil for this powerhouse of a meeting that combined the European Society of Endocrinology (ESE) with the European Society for Pediatric Endocrinology (ESPE) under one roof. One of our favorite parts of a large professional conference is the posters: scientists, researchers, European Congress of Endocrinology 2025: Inspiration Across the Pond
and physicians at all levels of experience share current and late-breaking findings in easy-to-read format. Many times it is a glimpse into ongoing work that will be presented at a later date, and at this meeting in particular it came from all around the world. We will share many of our personal highlights, with summaries in the print newsletter coming next month. One of the first conversations we had as we were setting up our booth was with two representatives from Hybi (https://hybi.no/), an advocacy group out of Norway. It’s becoming very clear that there is a strong need for an equity-driven global network of advocacy, research, education, and patient support.....stay tuned!
2025 CSRF
U NOVEMBER 7-8
HOSTED BY:
WITH CO-HOSTS:
CONFERENCE LOCATION: Barrow Neurological Institute 2910 N 3 Ave, Phoenix, AZ 85013 rd SATURDAY 30th ANNIVERSARY PARTY LOCATION: 2825 W Thomas Rd, Phoenix, AZ 85013 (across the street)
Learn from the Past, Support and Educate in the Present, Boldly Contribute to Future Science
CSR F . N ET / CORTISOLSUMMIT 2025 CSRF.NET/CORTISOLSUMMIT2025
Global Support Calls
Please join us if you have questions or need support, and also if you have the spoons to BE the support for others! Sign up at the url below or visit csrf.net (front page upper left); Zoom link will be emailed within 24hrs of the call. https://surveymonkey.com/r/2025CSRFsupportcalls Upcoming Call Schedule (All Times Eastern):
Wednesday, June 11, 7:00pm Saturday, July 19, 11:00am
Please join us for a space where you can ask questions, vent a little, and find resources or information you need to better understand what’s going on with your loved one. Sign up at the url below or visit csrf.net (front page middle left); Zoom link will be emailed within 24hrs of the call. https://surveymonkey.com/r/CSRFCaregiverCalls Upcoming Call Schedule (All Times Eastern): Saturday, June 14, 11:00am Sunday, July 20, 7:00pm Caregivers ONLY Support Calls
Community Dinner in Newport Beach, CA 2/4/2025
SAVE THE DATE if we’re coming to a city near you! We’d love to break bread with you. These dinners are free for you and a guest if you wish to bring one. LIST UPDATED JUNE 2025 RSVP: https://www.surveymonkey.com/r/2025dinners June 21 - Chicago, IL July 12 - San Francisco, CA August-September TBD - Boston/Plymouth, MA Late September - Tampa, FL (pending) October 5 - Anaheim, CA
October 18 - Washington DC November 5 & 6 - Phoenix, AZ December TBD - Atlanta, GA
2025 CSRF
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