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Thanatophoric Dwarfism

What is Thanatophoric Dwarfism?

Thanatophoric Dwarfism is a rare disorder resulting from a defect in the fibroblast growth factor-3 gene.

 

Thanatophoric Dwarfism is a rare disorder resulting from a defect in the fibroblast growth factor-3 gene.
Acknowledgement of Thanatophoric Dwarfism has not been added yet.
3.5http://www.orpha.net
Synonyms for Thanatophoric Dwarfism has not been added yet.
Cause of Thanatophoric Dwarfism has not been added yet.
Symptoms for Thanatophoric Dwarfism has not been added yet.
Diagnosis of Thanatophoric Dwarfism has not been added yet.
Diagnostic tests of Thanatophoric Dwarfism has not been added yet
Treatments of Thanatophoric Dwarfism has not been added yet.
Prognosis of Thanatophoric Dwarfism has not been added yet.
Tips or Suggestions of Thanatophoric Dwarfism has not been added yet.
References of Thanatophoric Dwarfism has not been added yet.
Thanatophoric Dwarfism Created by TDSurvivor
Last updated 10 Jun 2009, 08:05 PM

Posted by TDSurvivor
10 Jun 2009, 08:05 PM

Our son is a survivor of a rare form of dwarfism called Thanatophoric Dwarfism. Read his story at www.caringbridge.org/visit/samuelmann

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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 a mother of a little boy who has Thanatophoric Dysplasia who is trying to find information and maybe even help with living with this condition.
Our son is a TD survivor. My hope is that his story will encourage other families facing this diagnois that nothing is impossible. For more on our son, go to...
I am currently 5 months pregnant with an angel boy diagnosed with thanatophoric dysplsia.
I had a little boy in 2006 who was born with Thanatophoric Dysplasia.

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Thanatophoric Dwarfism

Created by TDSurvivor | Last updated 10 Jun 2009, 08:05 PM


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