Advocating for your children can and does make a difference!
On March 6, 2012, USA Today published an article spotlighting a brave family with twin girls suffering a rare and fatal genetic disease. Niemann Pick Type C disease, often called childhood Alzheimer’s, has brought the Hempel family through rigorous challenges and constant battles in an effort to keep their children alive.
Yet, an approval with a drug called cyclodextrin from the FDA brings encouragement and hope to the Niemann-Pick Type C and rare disease communities.
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