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Hemophilia

What is Hemophilia?

Hemophilia is an inherited bleeding disorder which prevents the blood from clotting normally.

 

Hemophilia is an inherited bleeding disorder which prevents the blood from clotting normally.
Acknowledgement of Hemophilia has not been added yet.
7.7http://www.orpha.net
Synonyms for Hemophilia has not been added yet.
Cause of Hemophilia has not been added yet.
Symptoms for Hemophilia has not been added yet.
Diagnosis of Hemophilia has not been added yet.
Diagnostic tests of Hemophilia has not been added yet
Treatments of Hemophilia has not been added yet.
Prognosis of Hemophilia has not been added yet.
Tips or Suggestions of Hemophilia has not been added yet.
References of Hemophilia has not been added yet.
female hemos Created by sarcazm
Last updated 2 Feb 2009, 12:18 AM

Posted by sarcazm
2 Feb 2009, 12:18 AM

anyone out there besides me? and i don't mean von willembrands. i mean factor XI.

Gene Therapy Trial Created by drnance
Last updated 27 Jan 2009, 07:01 PM

Posted by drnance
27 Jan 2009, 07:01 PM

Hi, I was just wondering if anyone had any experience with gene therapy?

Community External News Link
Title Date Link
Potential Gene Therapy Safely Restores FVIII Clotting Factor in Animals and Human Cells, ASC Therapeutics Reports 05/08/2019
Sobi and Sanofi Donate up to 500 Million Additional IUs of Clotting Factor to WFH Humanitarian Aid Program 06/14/2020
U.S. FDA approves Sanofi's bleeding disorder therapy 03/25/2023
Study Highlights Poor Health Outcomes in Older Adults with Hemophilia 11/25/2023
Community Resources
Title Description Date Link
National Hemophilia Foundation

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

03/20/2017

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. 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.

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Community User List

I have a dear son in law with Afibrinogenemia and I am looking to connect with others with this blood disorder.
I create medical education materials for patients in many different areas and would love to hear mor about the challenges and issues facing patient's the Gaucher Disease
I am a healthcare researcher with an interest in rare/orphan diseases
I'm a anesthesiology medical doctor, I'm working in a private Clinic in Bogotá, Colombia
i have hemophilia c, factor XI deficiency.
I'm just a guy looking for friends.

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Discussion Forum

female hemos

Created by sarcazm | Last updated 2 Feb 2009, 12:18 AM

Gene Therapy Trial

Created by drnance | Last updated 27 Jan 2009, 07:01 PM


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