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Experience

I am a rare disease advocacy strategist working with nonprofit and industry organizations in the rare disease space.  I have provided mentoring and support for more than 300 rare disease nonprofit organizations and in the areas of business structure, marketing and communications, event planning, and social media training.  I am 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 my 3-year-old daughter, Hannah, who lost her battle to Gaucher Type 2/3, an ultra-rare genetic disorder. 

oc1      Rare Disease Patient Advocacy and Engagement

  • Successfully launched the Global Genes RARE Foundation Alliance program, an active collaborative initiative with over 350 patient advocacy group members
  • Mentor advocates on best practices for rare disease organization growth including nonprofit development, patient and family support, research and clinical trials, and community and volunteer building
  • Identify and partner with Key Opinion Leaders and Advocate Leaders to support rare disease groups in need of resources, education and support
  • Public speaking and event moderation on topics of advocacy empowerment, nonprofit building, community development, patient engagement and healthcare education
  • Developed and maintain good working relationships with biotech and pharmaceutical industries, academia, research and legislative partners
16996516_10155075592136983_7822711059219643115_n      Event Planning and Coordination

  • Coordinate logistics for yearly advocacy educational conferences with up to 500 attendees and 80 speakers
  • Utilize in-depth program management of multi-regional disease-specific patient meeting program with a million-dollar annual budget
  • Organized multi-year community fundraising festival with over 1250 annual attendees as well as successful 5K events
  • Directed marketing efforts to increase organization awareness and program attendance using social media networks and traditional promotion
oc4      Nonprofit Organization Management

  • Administer Medical and Therapy Equipment Grant program including budget management, equipment procurement and distribution
  • Experienced project team leader for business planning, new programs, products and services
  • Strategic plan implementation to strengthen nonprofit organization and increase its effectiveness
  • Onsite supervise of large teams of volunteers for multiple events and programs

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Contact Info

Email: carrie@ostreaconsulting.com

Phone: 702-706-5750

Address:
10624 S. Eastern Avenue #A847
Henderson, NV 89052

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