Category Archives: The Rarelink

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 – Here’s why:

Rieger Syndrome @ Wrong Diagnosis

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

Help out The Rarelink

For those not already in the know, I am in the middle of filing for 501c3 status for my non-profit organization, The Rarelink. While the site has been online on and off over the years, I’ve finally taken the plunge to make the organization official and begin giving other families the help they deserve. In fact, if you look at the top of this page, you’ll see a link to the site!

The Rarelink exists to provide compassionate, empathetic support and information services for families dealing with the diagnosis of a rare disorder. Right now, I’m working hard behind the scenes with the official IRS paperwork and building the website. But to reach other people, other families, we need money. Right now, 100% of all funds raised will go to support the organization, with full accounting of all funds available at the website (when we raise funds).

Won’t you help us?

Nominate The Rarelink to win Intuit’s Love a Business monthly contest. And, once you’ve nominated us, spread the word! Help make a difference in the life of families dealing with the uncertainties of a diagnosis. Visit The Rarelink and learn more, and even visit our Facebook Fan Page!

Thanks so much for your help!


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Filed under Special Needs, The Rarelink