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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EveryLife Foundation for Rare Diseases

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My Rare Disease Week in Washington DC 2018

This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was chosen since February is the only month with 28 or 29…

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Rare Disease Week 2017

Reprinted from Linked-In   The last day of February is designated internationally as World Rare Disease Day and organizations representing patients and advocates dealing with rare diseases come together to raise awareness through local events and activities. Additionally, each year in the United States, hundreds of rare disease advocates convene in Washington, D.C. to meet with…