Developing Professional Advisory Boards

Each support group or organization representing individuals affected by a medical condition should have professionals providing some guidance to the group on various matters.

The Genetic Alliance offers these guidelines for professionals who participate in genetic support groups:

• Provide background material and expertise to assist in policy development.
• Advise staff and board in area of expertise.
• Offer technical assistance to selected projects where requested.
• Participate in drafting documents or informational pieces as requested for distribution
• Review and/or make recommendations on publications and statements.
• Foster partnerships and collaborations within advisor's community of expertise.
• Promote support group programs, activities, education.
• Respect the confidentiality and privacy of the individuals and group.
• Promote informed decision making for individuals without coercion.

Medical Advisor: If the group is focused on a single "disease," a medical advisor is usually a physician who is considered an expert or most knowledgeable in the condition. The medical advisor(s) can keep the group up to date on information from the medical and research communities and help to ensure that information about the condition that is disseminated by the group is accurate and appropriate.

Medical Advisory Board: A medical advisory board is usually composed of practicing physicians who are knowledgeable about a particular disorder or group of disorders and scientists who are conducting research in the disorder or related conditions.

Clinical Advisory Board: A clinical advisory board is usually composed of practicing physicians who treat different aspects of the disorder. This board may work with the lay advocacy group to develop diagnostic criteria, along with research scientists, and treatment guidelines for the disorder.

Research Advisory Board: A research advisory board should be composed of individuals who can understand the research and/or the implications of the research on the human participants and affected individuals. For many groups this board is composed of researchers involved in research on the condition. For other groups, there is a conscious decision not to involve individuals conducting research on the condition because they will have a difficult time making unbiased decisions about the direction of research and funding projects, potentially from their competitors.

Professional Advisory Board: A professional advisory board may include practicing physicians knowledgeable in the condition, research scientists investigating the condition or related disorders, and other health professionals such as genetic counselors, social workers, and other providers. In addition, it can include other professionals - lawyers, accountants, development officers and other executives from various companies and foundations.

The responsibilities of the advisors are:

• Serve as a resource about scientific and medical issues, including opinions on methods of patient management
• Actively educate professional and lay audiences about the condition
• Write and review educational materials, including newsletter articles
• Offer advice and counsel on research issues
• Assist in establishing a research funding program
• Identify and advise on promising areas of research
• Help to compile lists and directories of professionals and medical facilities with experience with the condition
• Identify and solicit funds for the organization
• Provide expertise in business practices and general management

» Tax and Finance: Setting up Useful Systems