Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

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rare disease

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Article: Steps to Take After Receiving a Rare Diagnosis

As a rare parent advocate, one of the questions I get asked most by newly diagnosed families is “What do I do next? How will I manage this?” My good friend and colleague, Anne Bruns, and I co-authored this article for Exceptional Parents Magazine’s annual “Navigating Special Needs Resources” magazine tackling just this topic.   Click…

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#CuresNow has passed! 21st Century Cures Act

Happy Tears today following the overwhelmingly positive vote in the Senate today for 21st Century Cures! Our family has worked with hundreds of rare disease advocates all over the U.S. to create HOPE for our rare disease community. Thank you U.S. Senator Dean Heller and Senator Harry Reid for putting our Nevada rare children’s needs…

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Genetic, Rare, and Immune Disorders Symposium

We attended the Genetic, Rare, and Immune Disorders Symposium in Fairfax, Virginia, last weekend. Carrie, Hannah’s mom, was a speaker discussing the importance for families to get involved in advocacy for their rare disease communities.    Robert, Hannah’s Dad, met with researchers and scientists to learn the latest advancements in rare disease treatments.