Carrie Ostrea, Rare Disease Advocate

Carrie Ostrea, Rare Disease Advocate Providing information, education, and mentoring to patients, advocates, and nonprofit organization l

Providing information, education, and mentoring to patients, advocates, and organization leaders in the rare disease community. Nonprofit organization building, awareness and marketing campaigns, volunteer recruitment and management, research and drug development, and social media training.

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10624 S. Eastern Avenue #A847
Henderson, NV
89052

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My Rare Disease Nonprofit Journey

One of the most fulfilling things for me since our Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community.

I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of biotech/pharma partners towards one common goal - change for our future in the rare disease space. Whether that is starting or strengthening a nonprofit or support group, funding science for research, creating awareness and marketing campaigns, bridging connections, or just a shoulder to vent on -- my passion was to help make it happen.

I will be continuing this passion in multiple ways including this page where I will share tidbits, articles, upcoming events, educational opportunities, and more with anyone interested in advocating for the rare disease space. This is a non-biased site, so you will see posts from many different organizations that work to support rare diseases groups, nonprofits, marketing, etc.