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Paroxysmal Nocturnal Hemoglobinuria

What is Paroxysmal Nocturnal Hemoglobinuria?

Paroxysmal nocturnal hemoglobinuria is a rare blood disorder characterized by anemia due to destruction of red blood cells in the bloodstream, red urine, and thrombosis.

 

Paroxysmal nocturnal hemoglobinuria is a rare blood disorder characterized by anemia due to destruction of red blood cells in the bloodstream, red urine, and thrombosis.
Acknowledgement of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
0.55http://www.orpha.net
Synonyms for Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Cause of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Symptoms for Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Diagnosis of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Diagnostic tests of Paroxysmal Nocturnal Hemoglobinuria has not been added yet
Treatments of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Prognosis of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
Tips or Suggestions of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
References of Paroxysmal Nocturnal Hemoglobinuria has not been added yet.
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Community External News Link
Title Date Link
What to know about paroxysmal nocturnal hemoglobinuria (PNH) 10/16/2021
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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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My son, 16, was diagnosed with PNH in September 2014 and was scheduled for a bone marrow transplant in December, however, his marrow recovered and he is now on Soliris.

 

I work for the Aplastic Anemia & MDS International Foundation
mother of pacient with pnh
PNH dx 2005 at age 26

 

 

President, PNH Support Association of Australia Inc

 

linda.charlton@pnhsaa.org.au

 

www.pnhsaa.org.au

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