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Erythropoietic Protoporphyria

What is Erythropoietic Protoporphyria ?

Erythropoietic Protoporphyria is a mild form of porphyria causing photosensitivity.

 

Erythropoietic Protoporphyria is a mild form of porphyria causing photosensitivity.
Acknowledgement of Erythropoietic Protoporphyria has not been added yet.
0.65http://www.orpha.net
Synonyms for Erythropoietic Protoporphyria has not been added yet.
Cause of Erythropoietic Protoporphyria has not been added yet.
Symptoms for Erythropoietic Protoporphyria has not been added yet.
Diagnosis of Erythropoietic Protoporphyria has not been added yet.
Diagnostic tests of Erythropoietic Protoporphyria has not been added yet
Treatments of Erythropoietic Protoporphyria has not been added yet.
Prognosis of Erythropoietic Protoporphyria has not been added yet.
Tips or Suggestions of Erythropoietic Protoporphyria has not been added yet.
References of Erythropoietic Protoporphyria has not been added yet.
See Disorder Resources for news link on FDA approved therapy for Erythropoietic Photophorphyria Created by RareshareTeam
Last updated 13 Oct 2019, 11:07 PM

Posted by RareshareTeam
13 Oct 2019, 11:07 PM

Community External News Link
Title Date Link
Erythropoietic Protoporphyria: Genetic condition makes toddler allergic to sun 07/29/2018
FDA approves first treatment to increase pain-free light exposure in patients with a rare disorder 10/13/2019
Community Resources
Title Description Date Link

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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I am 40 years old and suffer fro EPP since being 3 or 4.
Im a 29 year old mother of 4 girls who all suffer with epp.
Hi my name is Sharon and I am a sufferer of Erythropoietic Protoporphyria (EPP). Just a bit about myself...I'm from Bristol in the UK, and lead a fairly hectic life! I am studying a degree in...

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