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Best Disease

What is Best Disease?

Best Disease is a rare genetic eye disease affecting the retina, causing progressive vision loss.

 

Best Disease is a rare genetic eye disease affecting the retina, causing progressive vision loss.
Acknowledgement of Best Disease has not been added yet.
4.4http://www.orpha.net
Synonyms for Best Disease has not been added yet.
Cause of Best Disease has not been added yet.
Symptoms for Best Disease has not been added yet.
Diagnosis of Best Disease has not been added yet.
Diagnostic tests of Best Disease has not been added yet
Treatments of Best Disease has not been added yet.
Prognosis of Best Disease has not been added yet.
Tips or Suggestions of Best Disease has not been added yet.
References of Best Disease has not been added yet.
I have Best's Created by Islie
Last updated 12 Aug 2017, 01:42 PM

Posted by Aseaton
12 Aug 2017, 01:42 PM

I rad your blog. It makes me feel less alone:)  I was diagnosed about 5 years ago and have a hard time to xplaining to others what I can see and not see. It is nice that someone out there has an understanding of the nuances of bests. Thank you for sharing.

Posted by Islie
17 Apr 2016, 11:58 AM

Hi, I just started a blog so I can connect with others who have Best Disease. You can find it at www.mybestmateblog.wordpress.com I'm planning to add audio posts for those who have reduced sight. Hope to see you there, Isla

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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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Diagnosed 6 months ago with Best Disease. Am 30 years old. I am now having a pretty steady decline in y vision am looking for Amy help or answers I can get. I am noticing that there really isn't...
Just looking for a doctor that researce my disease and can help with my eyesight.

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I have Best's

Created by Islie | Last updated 12 Aug 2017, 01:42 PM


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