Von Hippel-Lindau disease is a rare inherited genetic condition involving the abnormal growth of tumors in parts of the body which are particularly rich in blood supply.
There is already an existing support community for people with VHL at http://vhl.inspire.com We invite you to join the conversation there, where there are years of previous conversations, and nearly a thousand people to welcome you. At http://vhl.org you will find 16 years of compiled information on VHL. We publish the latest findings in our newsletter (3-4 times a year), with updates between paper issues in our e-news electronic newsletter. Please JOIN - become a member, help to support our existing projects, and fund research as well. You are always welcome to phone us at 1-800-767-4VHL (800-767-4845) which is a toll-free hotline available from US, Canada, and Mexico. Write to us at firstname.lastname@example.org VHL Family Alliance 2001 Beacon Street, Suite 208 Boston, MA 02135
Publication date: 17 Jun 2020
Community: Von Hippel-Lindau Disease
Von-Hippel Lindau Syndrome Patients or Caregivers Wanted for Paid Project
RareShare has been contacted by a market research group offering a paid opportunity for Von Hippel-Lindau patients and caregivers in Germany, France or the UK to share their experiences through an online digital journal or a web-cam based interview.
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.
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.
Her husband, Frank Graff, was diagnosed at...
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