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Buschke Ollendorff Syndrome

What is Buschke Ollendorff Syndrome?

Buschke Ollendorf Syndrome is a rare hereditary disorder of connective tissue.

 

Buschke Ollendorf Syndrome is a rare hereditary disorder of connective tissue.
Acknowledgement of Buschke Ollendorff Syndrome has not been added yet.
5.0http://emedicine.medscape.com/article/1117654-overview
Synonyms for Buschke Ollendorff Syndrome has not been added yet.
Cause of Buschke Ollendorff Syndrome has not been added yet.
Symptoms for Buschke Ollendorff Syndrome has not been added yet.
Diagnosis of Buschke Ollendorff Syndrome has not been added yet.
Diagnostic tests of Buschke Ollendorff Syndrome has not been added yet
Treatments of Buschke Ollendorff Syndrome has not been added yet.
Prognosis of Buschke Ollendorff Syndrome has not been added yet.
Tips or Suggestions of Buschke Ollendorff Syndrome has not been added yet.
References of Buschke Ollendorff Syndrome has not been added yet.
buschke ollendorff syndrome Created by julie43
Last updated 18 Dec 2012, 07:43 AM

Posted by julie43
18 Dec 2012, 07:43 AM

Hello .. Would love to speak to anyone else with this syndrome please..x

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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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We are a happy loving and supportive family just looking for others with same syndrome for an insight as to what to expect...
Hey my name is Laura nickname Lala. I am 14 years old and i have a rare syndrome called Buschke Ollendorf Syndrome and also can be called Osteopoikilosis maening Spotted Bones. I love animals and...

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buschke ollendorff syndrome

Created by julie43 | Last updated 18 Dec 2012, 07:43 AM


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