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Idiopathic Pulmonary Haemosiderosis

What is Idiopathic Pulmonary Haemosiderosis?

Idiopathic Pulmonary Haemosiderosis is a rare lung disorder characterized by alveolar capillary bleeding and accumulation of iron (in the form of haemosiderin) in the lungs.

 

Idiopathic Pulmonary Haemosiderosis is a rare lung disorder characterized by alveolar capillary bleeding and accumulation of iron (in the form of haemosiderin) in the lungs.
Acknowledgement of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Prevalence Information of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Synonyms for Idiopathic Pulmonary Haemosiderosis has not been added yet.
Cause of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Symptoms for Idiopathic Pulmonary Haemosiderosis has not been added yet.
Diagnosis of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Diagnostic tests of Idiopathic Pulmonary Haemosiderosis has not been added yet
Treatments of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Prognosis of Idiopathic Pulmonary Haemosiderosis has not been added yet.
Tips or Suggestions of Idiopathic Pulmonary Haemosiderosis has not been added yet.
References of Idiopathic Pulmonary Haemosiderosis has not been added yet.
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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 has idiopathic pulmonary hemosiderosis. His first hemorrhage was at age 3 and he just had a recurrence at age 10 this month.
I AM 38 I HAVE NO SUPPORTS OR A DOCTOR THAT KNOWS ANYTHING ABOUT MY CONDITION
Alternative better living environment
Mother to a wonderful 8 year-old with Idiopathic Pulmonary Hemosiderosis. Also have a beautiful 13 year-old who is her sister's BFF! I have a great husband.

 

 

Best Friend=Jesus Christ!
Father of a adult daughter who was diagnosed at 3 yrs with Idiopathic Pulmonary Hemosiderosis. Have ran the only website with information and resources since 1995

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