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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 collaborations with different disease groups, industry partners, and healthcare professionals may have on each group at the end of 2018.

If you are interested in participating, please review the following requirements:

  • Be in the United States (phase 2 will go international)
  • Willing to connect by phone at least 3 to 4 times a year throughout 2018
  • Willing to connect actively by email at least once a month throughout 2018
  • Focus on patient support, rare disease research and drug development, and/or healthcare professional education
  • Looking for patient/parent advocates, nonprofit leaders, biotech/pharma advocacy partners, or healthcare specialist in rare and/or genetics

Click here to sign up! Only 100 spots available, so register soon.

This will be an exciting project – hope you join me! Matching begins April 2018.

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

About Carrie

Carrie Ostrea, principal in Ostrea Consulting LLC, is a rare disease advocacy strategist working with nonprofit and industry organizations in the rare disease space. She is also the Executive Director and Co-Founder of the Little Miss Hannah Foundation, a 501(c)3, non-profit organization which was created to honor her 3-year-old daughter, Hannah, who lost her battle to Gaucher Type 2/3, an ultra-rare genetic disorder. 

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Email: carrie@ostreaconsulting.com

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