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Piebaldism

What is Piebaldism?

Piebaldism is a rare autosomal dominant disorder of melanocyte development characterized by a congenital white forelock and multiple symmetrical hypopigmented or depigmented macules.

 

Piebaldism is a rare autosomal dominant disorder of melanocyte development characterized by a congenital white forelock and multiple symmetrical hypopigmented or depigmented macules.
Acknowledgement of Piebaldism has not been added yet.
0.25http://www.orpha.net
Synonyms for Piebaldism has not been added yet.
Cause of Piebaldism has not been added yet.
Symptoms for Piebaldism has not been added yet.
Diagnosis of Piebaldism has not been added yet.
Diagnostic tests of Piebaldism has not been added yet
Treatments of Piebaldism has not been added yet.
Prognosis of Piebaldism has not been added yet.
Tips or Suggestions of Piebaldism has not been added yet.
References of Piebaldism has not been added yet.
Familial? Created by shar5geo
Last updated 11 Oct 2010, 11:02 AM

Posted by ScottConn62
11 Oct 2010, 11:02 AM

Try this: http://www.facebook.com/#!/group.php?gid=108658871043

Posted by shar5geo
10 Oct 2010, 05:40 PM

Scott, Not having any luck connecting to the larger Facebook page. Could you provide the link? Thanks!

Posted by shar5geo
2 Oct 2010, 12:35 PM

I found the 5-6 one. Will try to find the larger group. Thanks for the update!

View Full Thread (5 more posts)
Community Resources
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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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Does anyone with this condition have any autoimmune diseases.

 

Lupus

 

Sjogrens

 

Leukaemia

 

Joint swelling and pain

 

Photo and light sensitivity
I have piebaldism. I got it from my father who got it from his mother who got it from her father... I have many family members who have it too. It is a great source of pride for us.

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Familial?

Created by shar5geo | Last updated 11 Oct 2010, 11:02 AM


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