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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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Hannah Ostrea

March 8, 2018 by Carrie Ostrea

ARTICLE: From Rare Diagnosis to Fierce Advocacy

Thank you Coriell Institute for Medical Research for sharing our family’s story and why we are so passionate about working towards change in our #raredisease community! “Advocacy can give patient families – families who have been dealt an often life-changing diagnosis – an opportunity to take charge of their situation, participate in research, and focus…

Filed Under: Blog, LMHF News Tagged With: Advocacy, Carrie Ostrea, Coriell Institute, Hannah Ostrea, Make-a-Wish

February 28, 2017 by Carrie Ostrea

Today is Rare Disease Day

Today is World Rare Disease Day celebrating our Little Miss Hannah who was diagnosed with Gaucher Disease Type 2/3.  Please take a few minutes to learn why this day is so important to our rare disease  community.   

Filed Under: Blog, LMHF News Tagged With: Gaucher Disease, Hannah Ostrea, World Rare Disease Day

April 10, 2013 by Carrie Ostrea

Little Miss Hannah Continues to Impact the Rare Disease Community

Rare Disease Impact Report

Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face. “We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as…

Filed Under: Blog, front side, LMHF News Tagged With: Hannah Ostrea, Rare Disease News

March 5, 2012 by Carrie Ostrea

Little Miss Hannah’s Legacy Brings Awareness to Rare Disease

written by Mina Frannea, Today’s Mama Each year on Rare Disease Day, participants from around the world advocate for those who are affected by rare diseases, bringing attention to the need for improved access to treatment and for higher standards in diagnosis and care of patients. The observance of Rare Disease Day falls on the last day of…

Filed Under: Blog Tagged With: Hannah Ostrea, In the Media

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Little Miss Hannah Foundation is a 501(c)(3) tax-exempt nonprofit corporation, EIN# 45-3993921