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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 15, 2017 by carrie

National Institutes of Health (NIH) Tweet Chat

Mark your calendars! The National Institutes of Health (NIH) is hosting a Tweet Chat on Feb. 21, 2017 from 1-2pm ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D. - NCATS Director Christopher P. Austin, M.D. - NCATS Office of Rare Diseases Research Director Petra Kaufmann, M.D., … [Read more...] about National Institutes of Health (NIH) Tweet Chat

Filed Under: Social Media Tagged With: NCATS, NIH, Rare Disease Day, tweetchat, Twitter

February 14, 2017 by carrie

How to Participate in Rare Disease Tweetchats

Those of us in the rare disease community are spread out far and wide, but thanks to social media, we are have robust and informative discussions about topics affecting the rare disease community.  Whatever topic you may be interested in, you know that there are others in our community who want to … [Read more...] about How to Participate in Rare Disease Tweetchats

Filed Under: Social Media Tagged With: ABC News, MassBio, NIH, NIHChat, NORD, PatientDriven, Rare Disease Day, social media training, tweetchat, Twitter

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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