Tuesday, February 7, 2012

Christian's Conquest ramps up to promote Rare Disease Day

Rare but Strong Together

That is the theme for the 5th Annual Global Awareness campaign highlighting Rare Disease Day.

Christian’s Conquest will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29.  The purpose is to focus attention on the needs of patients and families affected by rare diseases.

Please visit www.rarediseaseday.us and follow us here at Christian's Conquest this month as we bring news of not only our journey with rare disease but others whose lives have impacted thousands through a series of announcements and videos.

And here's the first: A Rare One, recorded for The Foundation for Children with Atypical HUS by the Tricky Britches, enjoy!

Kiki's Dad


Mary at LaL Solace said...

Thank you for sharing your son's story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. As you know, it is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org

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