Pure Autonomic Failure is a rare disorder involving the malfunction of the autonomic nervous system.
My name is Ruth and I've read your post here in RareShare regarding your health issues. I can feel that you really want to find out the reason behind this. I am suggesting to try and check CrowdMed company via (https://www.crowdmed.com/how-it-works). They got pool of medical specialists who can help you.I'll appreciate also if you can share the company website to your family and friends who are experiencing tough health conditions. There's always an answer to unsolved health mystery cases with CrowdMed. Hope to hear from you! Ruth
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.
Having had CRPS since 2004 & subsequently developing what was thought to be dysautonomia, I had attributed all of my symptoms to those conditions or the medications which were being used to...
I am an senior electrical engineering...
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