Short Bowel Syndrome is a disorder causing malabsorption due to the surgical removal of the small intestine or a congenital short bowel.
It would have been nice if the of sign up page's first info box was titled 'login name' instead of just 'login'. I just put what, not knowing what they really were needing Anyways, my bowel condition is a bit beyond SBS. I only have 3 feet of jejunum and my stomach. A foot of it does not work well. I had an ileostomy for 25 years before a butcher killed the rest of my small bowel. I have the shorten bowel since 1998. I say I am an expert for sure. A resident internist to be doc says he learning from me things that are not taught in the university. I left TPN dependency long ago due to a defunct medical center. I get hydration infusion twice a week. I have a tweaked highly individualize regimented diet that is not so regimented anymore. So, hi everyone. I hope to learn and share here. night, night Richard
daisy can you please email me i would really like to have a nice talk with you and btw my baby girl has had great doctors i might be able to give you some helpfull information.
Elymar1019@yahoo.com if you have short gut and want to share ur story
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.
I am 70 years of age. Male. Do life alone except for treatment center staff, unclose son and unclose sister.
I am being patient waiting...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Created by what | Last updated 21 May 2016, 04:20 AM
Created by elymar1019 | Last updated 4 Aug 2009, 03:28 AM
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.