Dandy-Walker Syndrome
What is Dandy-Walker Syndrome?
Dandy-Walker Syndrome is a rare congenital brain malformation.
| Name | Description |
|---|---|
| Slow motor development | Slow motor development |
| Enlargement of the skull | Enlargement of the skull |
| Unsteadiness | Unsteadiness |
| Lack of muscle coordination | Lack of muscle coordination |
| Increased head circumference | Increased head circumference |
| Abnormal breathing patterns | Abnormal breathing patterns |
Last updated 13 Aug 2008, 01:55 PM
13 Aug 2008, 01:55 PM
question is: is normal to see, child has fiew day when all sems to be relative normal, and another 2-3 day when it can not walk trougt obstacles, drops on clear ground, speak is not so unersteandible. in tehnical speak we can say like empty battery.... is posible to say that can be chemical (or what) variation which can be treated and healed ? ...fix the good days. for me the variation is hope for beter (no?) sory for my bad english, i'hope was understeadible ;-) dad
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- 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.
Community Leaders
Expert Questions
Ask a question
Community User List
Start a Community
Don't See Your Condition On Rareshare?
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
FAQ
Have questions about rareshare?
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Discussion Forum
daily variations
Created by kmatokov | Last updated 13 Aug 2008, 01:55 PM
Our Communities
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITY
Our Resources
Our rare disease resources include e-books and podcasts
Our Community Leaders
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.