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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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Latest News

May 5, 2018 by Carrie Ostrea

2018 Scholarship Winner Essay – Jasmin Garcia

Written by Jasmin Garcia, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. To this day, I cannot remember a time in my life that our lives did not revolve around my brother Brian. I was only three years old when he was born so I can’t say that I…

Filed Under: Blog, LMHF News Tagged With: 2018 Scholarship Recipient, advocate, brian garcia, Jasmin Garcia, Lennox Gastaut Syndrome

May 5, 2018 by Carrie Ostrea

2018 Scholarship Winner Essay – Chloe Davis

Written by Chloe Davis, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. When my sister was 7 years old, she sat down one day and wrote a list she called “48 Ways to serve people, friends, and family”. This list included acts of service that Lexi saw…

Filed Under: Blog, LMHF News Tagged With: 2018 Scholarship Recipient, advocate, Chloe Davis, Spina Bifida

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

March 1, 2018 by Robert Ostrea

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…

Filed Under: Blog, LMHF News Tagged With: Abigail Ostrea, Advocacy, EveryLife Foundation for Rare Diseases, Legislation, Robert Ostrea, World Rare Disease Day

February 20, 2018 by Carrie Ostrea

2018 Vegas Cares About Rare Event Success!

Our Vegas Cares About Rare Kids 5K this weekend was just amazing! We were excited to see so many people in our community come out to support our organization and meet our 20+ VIP kids. We are tallying final numbers and we will be sharing our recap update and photos from the event soon. We…

Filed Under: Blog, LMHF News, Media Tagged With: CBS 8, Community Events, Kirsten Joyce, Local Rare Kids, Scholarship, Vegas Cares About Rare 5K, Vegas Rare 5K

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