May is Williams Syndrome Awareness Month! Learn How You Can Support the Cause.

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Organization: Williams Syndrome Association Submitted by: Mike McFall Thousands of children and adults are expected to join the Williams Syndrome Association (WSA) during the month of May to raise awareness for Williams Syndrome (WS), a genetic disorder that remains virtually unknown to the general public, educators and many doctors. Included in the awareness events are 50 walks in cities across … [more here...]

Mom of Son with Lowe Syndrome Leaves Job as NASA to Help Educate Others

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Why does he have glasses so young?  Why is he small for his age?  What is Lowe Syndrome?  These are just some of the questions I get asked often … [more here...]

A Foundation Building Strength Requesting Applications for Research, $1 Million in Funding

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A Foundation Building Strength is excited to announce funding of up to $1 million dollars to a winning grant who provides the best proposal on … [more here...]

New Educational Toolkits from Global Genes Demystify Rare Community’s Biggest Problems

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Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting Illness and you'll be met by blank … [more here...]

Possible New Treatment for Ectodermal Dysplasia Through Research at Greenwood Genetic Center

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A new treatment that could help children born with a rare genetic condition has been developed at the Washington University School of Medicine in … [more here...]

5k Run/Walk in Belle Chasse for Aspartylglucosaminuria (AGU)

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Blair Nielsen recently rganized a 5K Run/Walk and Family Fun Day to benefit Rare Trait Hope Fund, a group dedicated to funding research for an … [more here...]

Feeling Isolated and Infuriated About Insurance? Attend our “Navigating Insurance Issues” Webinar!

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Are you feeling a little lost when it comes to all the new rules in healthcare? Struggling to understand your own health insurance information and … [more here...]