Global Genes | RARE Project
September 30, 2013
Global Genes does incredible work in connecting rare disease advocates and organizations, assisting them in their collective and individual efforts, identifying and sharing best practices, and connecting advocacy with industry in order to make all of the advocacy, disease research, and drug development efforts more effective and efficient. I recently spoke on social media in rare disease advocacy at their RARE Patient Advocacy Summit and all of the sessions brought additional skills to my set or greater understanding to my efforts. I also attended their Gala which not only raises funds for this great cause but does that by highlighting amazing advocates. I look forward to watching and participating in where this organization will head in the future!
Ways to make it better...
If I had to make changes to this organization, I would...
Organize a strategic plan by bringing together industry, advocates, and nonprofit professionals to set a concrete direction and goals for the next 5-10 years.
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