Acquired hemophilia is a rare disorder characterized by uncontrolled bleeding. It is what is known as an autoimmune disorder, the immune system mistakenly attacks healthy tissues in the body. In this disorder, the immune system attacks and inhibits blood coagulation factors. These factors are essential to helping the blood to clot to stop bleeding. People with acquired hemophilia do not bleed faster than unaffected people, but have difficulty stopping the flow of blood. Symptoms may include nosebleeds, blood in the urine, bleeding in the gut and genital track and easy bruising.
In half of the people with acquired hemophilia the underlying cause that triggers the disease is unknown. The other half suffer from other autoimmune conditions such as lupus or rheumatoid arthritis.
Acquired hemophilia is a rare disorder characterized by uncontrolled bleeding. It is what is known as an autoimmune disorder, the immune system mistakenly attacks healthy tissues in the body. In this disorder, the immune system attacks and inhibits blood coagulation factors. These factors are essential to helping the blood to clot to stop bleeding. People with acquired hemophilia do not bleed faster than unaffected people, but have difficulty stopping the flow of blood. Symptoms may include nosebleeds, blood in the urine, bleeding in the gut and genital track and easy bruising.
In half of the people with acquired hemophilia the underlying cause that triggers the disease is unknown. The other half suffer from other autoimmune conditions such as lupus or rheumatoid arthritis.
0.1http://www.orpha.net
Hi, I notice this community only has one member, I just wondered if the one member uses this site any more really, thank you.
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.
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 Samrobandolivia | Last updated 28 Jun 2013, 09:43 PM
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITYOur 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.