Rareshare

Title	Date	Link
Epidermolysis Bullosa: 'My skin tears and blisters at the slightest touch, but it won't stop me from modelling'	08/30/2018
Change the genes to fix the skin	04/04/2019
Eddie Vedder Leads Star-Studded Event To Raise Awareness And Funds For Rare Disease	11/15/2020
Krystal Biotech and GeneDx Announce Collaboration to Provide No-charge Genetic Testing for Patients with Suspected Dystrophic Epidermolysis Bullosa (DEB)	10/16/2021
Gene-Based Therapy for Rare Skin Disease Succeeds in Phase III	11/30/2021
Gene-therapy gel shows promise for blistering skin disease in clinical trial	04/07/2022
What's Up Doc? Rare skin disorder causes blistering, calls for genetic counseling	07/01/2022
Model, 24, with Rare Skin Disease Bares Scars to Raise Awareness: 'I Choose to Show the Body I Was Given'	01/07/2023
Gene therapy gel heals decades-old wounds in trial for blistering skin disease	01/29/2023
Gene therapy gel heals decades-old wounds in trial for blistering skin disease	02/04/2023
6-Year-Old Enjoys Fundraiser for Her Rare Disease: I Wore 'a Unicorn Onesie and Butterfly Wings!'	04/08/2023
FDA Approves First Topical Gene Therapy for Treatment of Wounds in Patients with Dystrophic Epidermolysis Bullosa	05/21/2023

Community Resources

Title	Description	Date	Link

Clinical Trials

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

Complete the screening form.
Review the informed consent.
Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.