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


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


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


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


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)


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!


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...]