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Trichorhinophalangeal Syndrome Type 1

What is Trichorhinophalangeal Syndrome Type 1?

Trichorhinophalangeal Syndrome Type 1 is a rare inherited multisystem disorder characterized by unusual facial features and abnormalities of the epiphyses of the bones in the hands and feet.

 

Trichorhinophalangeal Syndrome Type 1 is a rare inherited multisystem disorder characterized by unusual facial features and abnormalities of the epiphyses of the bones in the hands and feet.
Acknowledgement of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Prevalence Information of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Synonyms for Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Cause of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Symptoms for Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Diagnosis of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Diagnostic tests of Trichorhinophalangeal Syndrome Type 1 has not been added yet
Treatments of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Prognosis of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
Tips or Suggestions of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
References of Trichorhinophalangeal Syndrome Type 1 has not been added yet.
share Created by janeray01
Last updated 16 Apr 2012, 11:30 AM

Posted by janeray01
16 Apr 2012, 11:30 AM

My daughter has Trp. syndrome, she is 12. She us in a skeletal dysplasia group but I live in Virginia does anyone have a good doctors that can treat it? Thanks, Jane

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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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hoping to learn more by connecting with people having similar experiences with TRPS
I have a 9yo daughter with trichorhinophalangeal syndrome.
I am a parent of a trps 1 child.

 

I live in NY and am looking for resourses for my 12 yr old son.

 

My Name is Angie Baldwin and I was born with Trichorhinophalangeal Syndrome1. I am doing research on this disease for a book I am writing to help others with this rare disorder.

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Created by janeray01 | Last updated 16 Apr 2012, 11:30 AM


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