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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Advocacy

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Rare Disease Legislative Conference

The Rare Disease Legislative Advocates (RDLA) organized a fantastic conference today, held at the historic National Press Club in Washington, D.C., designed to empower patient and parent advocates to be more active in the legislative process. Presentations by successful advocates such as Anthony Castaldo from the U.S. Hereditary Angioedema Advocates, Emil Kakkis from the Everylife…

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3rd Annual “Jeans for Genes” School event!

On February 22, 2013, over 2500 students participated in Little Miss Hannah’s 3rd Annual “Jeans for Genes Day” School Awarness event!   This year’s theme was “Education, Compassion, and Reflection of Childhood Rare Disease.” View pictures from this event! Students and staff from Vanderburg Elementary, Bartlett Elementary, and Lamping Elementary schools in Henderson, Nevada, left…

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Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness

This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C. This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of Congress to educate…

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Little Miss Hannah plays Santa

Little Miss Hannah Foundation played Santa this year to 17 families (more than 25 kids). Gifts specifically chosen for each child based on what they wanted most – including 11 pairs of shoes, two dozen toys, clothes, and stuffed animals. It makes us feel so good knowing that because of our sweet Hannah these families…