Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from SciTech Daily, a team of researchers affiliated with the University of Zurich's ITINERARE University Research Priority Program recently collaborated with Insilico Medicine to conduct research…
Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
2023 CRN Conference July 13-15, 2023 After four years apart, we welcome you to join us in Nashville, Tennesse, lovingly known as “Music City.” In addition to being surrounded by…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Written by K.M. I have never given much thought to how I would die. Perhaps because my health and longevity has been laid out for me since infancy. Maybe I…
May 7, 2023 will be recognized as Cystinosis Awareness Day. This will be a day to spread awareness about the rare disease cystinosis among the general public and the medical…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
According to a late October 2022 news release from gene therapy company AVROBIO, the sixth patient has been dosed in a Phase 1/2 clinical study evaluating AVR-RD-04 for patients…
In a late September 2022 news release from AVROBIO, Inc., the company’s gene therapy candidate AVR-RD-04 recently earned Rare Pediatric Disease designation. This investigational therapy is being developed as a…
For the last two and a half years, the COVID-19 pandemic has dominated the headlines. It has been hard to look online – or do anything in person – without…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part Two We were told about what…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part One At this stage, the ED…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Oscar was born in January 2020. He was a…
Avrobio has just announced that they will be stopping work on their investigative gene therapy for Fabry disease based on unexpected and disappointing results from a Phase 2 clinical trial.…
Maya Doyle is a health social worker specifically focused in pediatrics and the transition from pediatric care to adult care. She has been practicing for twenty years. Now, she works…
The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of…
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