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…
Hannah 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.
Little Miss Hannah Continues to Impact the Rare Disease Community
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…
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…