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advocacy

March 8, 2018 by carrie

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 … [Read more...] about ARTICLE: From Rare Diagnosis to Fierce Advocacy

Filed Under: Advocacy, Personal Tagged With: advocacy, Carrie Ostrea, Coriell Institute, Hannah Ostrea, Make-A-Wish, Robert Ostrea

March 3, 2018 by Robert Ostrea

My Rare Disease Week in DC 2018

Written by Robert Ostrea 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 … [Read more...] about My Rare Disease Week in DC 2018

Filed Under: Advocacy, Advocate Spotlight Tagged With: Abigail Ostrea, advocacy, Carrie Ostrea, legislative, Robert Ostrea

January 19, 2018 by carrie

Learn more about the #100RareVoices Project

In the rare disease community, many advocates work tirelessly to create HOPE for their specific rare disease. Sometimes they may be an army of many, maybe even an army of two. The purpose of this project is to bring together 100 people in the rare disease space to see the effect of new … [Read more...] about Learn more about the #100RareVoices Project

Filed Under: Advocacy Tagged With: #100RareVoices, advocacy, collaboration

October 18, 2017 by carrie

5 Steps to Becoming A Rare Disease Parent Advocate

When your lifestyle becomes overwhelming because you are caring for a medically complex child, the idea of becoming a rare disease advocate becomes daunting. "How do I add advocating for my child's rare disease community when I can barely keep my head above water?" is something I hear all the … [Read more...] about 5 Steps to Becoming A Rare Disease Parent Advocate

Filed Under: Advocacy Tagged With: advocacy, childhood rare disease, parent advocate

March 14, 2017 by carrie

Sisterhood of the Traveling Advocates

Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease.  Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard.  But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates

Filed Under: Advocacy, Personal Tagged With: advocacy, community, legislative, Rare Disease Day

February 10, 2017 by carrie

My Passion for Advocacy

One of the most fulfilling things for me since 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 … [Read more...] about My Passion for Advocacy

Filed Under: Advocacy, Personal Tagged With: advocacy, marketing, nonprofit, Ostrea Consulting, personal journey, research, sharing

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Email: carrie@ostreaconsulting.com

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