Rieger Syndrome – Neat Resource for Parents and Researchers

I don’t often find a new resource worth getting this excited over.

Though I am waiting for a response back from the folks at this site, I would like to encourage anyone looking for a snapshot search of the information available on their diagnosis to check out WrongDiagnosis.com – Here’s why:

Rieger Syndrome @ Wrong Diagnosis

I just stumbled upon this site, called wrongdiagnosis.com which had an absolutely phenomenal page listed on Rieger Syndrome. They included so many sections, and had tons of information (even if the little “daily dose” thing is completely unrelated!).

In any case, I also like the fact that Kat’s Cafe was listed under the patient experiences:

Kat's Cafe on the Rieger Syndrome @ Wrong Diagnosis :-)Isn’t that pretty neat? And such a welcome change from the journal listings also included. I’m trying to make contact with the other mom who posted, under the “Dalton’s Story” link to the right of mine. What a small world, right?

I like what they’ve done so much I even considered seeing if they would like to work with The Rarelink so that all of the Rare disease listings can start with some basic information. It’s a neat resource for those of us constantly looking for new information about our child’s rare disorder.

So it’s sharing time: 

What are some of the best resources online you have found, or stumbled upon, in the search for more information about your child’s disorder?

Share with us here at the Cafe, and include a link so others can check it out as well!

–Kat

Did you miss these other listings on Rieger Syndrome here @ Kat’s Cafe:

Research: Rare Disease Breakthrough and the Hope it Means

Do I Have to Answer that Question?

Awareness Starts With You …

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Filed under Parenting, Rare Diseases, Research, Special Needs, The Rarelink

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