Benefits of Collaboration with Advocacy Organization Community

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There are creative examples of research studies whose protocol design, from the very beginning, encourage mutual commitment to, and shared responsibilities for, research tasks. Among these approaches are advocacy organization efforts to fund, select and direct research of their particular rare conditions. One of the first and best prototypes for collaborative research teamwork between investigators and advocacy organizations is the March of Dimes' unrelenting and successful campaign to find a cure for polio.

Other more recent successes point out the unique research vantage point enjoyed by researchers funded by advocacy organization foundations. They work from start to finish inside the rare condition community and within sight of the concerns of families and participants. Through close proximity to the day to day rare condition specialists, i.e. families living with that rare condition, there is enhanced potential for achieving a better understanding of the complex physical and emotional layers of the rare condition. These direct connections between advocacy organizations and clinical researchers can augment opportunities for communication, collaborative, and trust, and support successful completion of the research study to the satisfaction of all parties involved.

Genetic Alliance Experience

Out of 600 advocacy organizations in the Genetic Alliance database in 2003, over 150 groups reported direct involvement in research on their rare condition, maintenance of a database of affected persons, and encouragement of frequent research/family interface. It is important to get a more accurate picture of the process of these collaborative efforts, that is, to what extent consumers are involved from the beginning of the research protocol, whether a medical advisory committee reviews the research proposals and selects research protocols, and the degree to which informed consent, educational and counseling components are considered standard practice. Organizations that have already been successfully working together with researchers serve as crucial models from which there is much to be learned. Genetic Alliance can help determine existing models of collaboration and introduce them to the research community for active role modeling.

Genetic Alliance stays aware of which organizations support collaborative research, how these efforts are proceeding, and to what extent these organizations might be willing to train, advise and mentor new organizations venturing into the research field. Umbrella organizations like Genetic Alliance are also well suited, along with the larger advocacy organizations, to provide workshops for the leaders of advocacy organizations interested in directing their own research. These workshops could benefit from participation of the research community to explain IRB functions, research design protocols, the need for privacy safeguards with respect to registries of affected individuals, informed consent procedures, advice on participant expectations, and issues of confidentiality, privacy and genetic discrimination. Genetic Alliance started this process at the September 1998 membership conference.

Individual advocacy organizations and research organizations also play a central role in linking researchers to families through conferences, newsletters, help lines, websites and registries of affected individuals.


A research partnership will develop between the consumer and research communities as respective visions, passions, interests and concerns are shared, appreciated and integrated. Optimal rare condition research happens within the context of shared collaboration and enlightenment, mutual respect and ongoing, two-way communication at every stage of the research protocol, from start to finish.

The bottom line is that rare condition research will work best through full partnership, collaboration and cooperation between the consumer and research communities. Genetic Alliance is ready to do its part to help make this happen. In our next section, we will look at three models for using many different approaches to pull together a research plan.


Working with Partners and Stakeholders Toolkit, from the International Alliance of Patients' Organizations, provides guidance and recommendations on how patient organizations can develop effective, long-term partnerships with a range of stakeholders, including other advocacy groups, government, industry, and health care providers. Additionally, it includes materials to assist organizations in developing their infrastructure and capabilities. Toolkit covers awareness-raising, advocacy, strategic planning, fundraising and effective communication.

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