New information about rare diseases is always being discovered.
As new symptoms are documented from patients and new research is developed, there’s a good amount of data that needs to be updated on a regular basis. The Genetic and Rare Diseases Information Center (GARD) does its best to be an up-to-date resource for patients and caregivers.
Just this month they’ve updated their page on Chudley Rozdilsky syndrome in order to accurately reflect the most common symptoms and the best resources. Every outside source of information is linked on their web page, so you can go directly to the organization’s website you’re reading about.
Here are some of the specific topics they address for Chudley Rozdilsky syndrome:
- The most common symptoms (present in 80-99% of patients)
- A complete list of symptoms
- FDA approved treatment options
- A list of support resources for patients and family members who are affected by the disease on a daily basis
- A list of educational resources
- The latest news on the disease
- Upcoming events
- A place to submit your personal question if it’s not answered on the website
GARD stays so up-to-date by publishing answers to the questions they get from real patients. It’s a great way to unify the community and spread the wealth of knowledge. Because chances are, if you do have a question, someone else is probably wondering the same thing. But no worries if you don’t want your question published, all you have to do is specify that when you submit it!