Advisory Boards

Each advocacy organization should have professionals providing some guidance to the organization on various matters.

Genetic Alliance offers these guidelines for professionals who participate in genetic advocacy organizations:

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 advocacy organization programs, activities, education
Respect the confidentiality and privacy of the individuals and organization
Promote informed decision making for individuals without coercion

[edit] Advisory Roles

Medical Advisor: If the organization is focused on a single condition, 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 organization up to date on information from the medical and research communities, and can help to ensure that information about the condition that is disseminated by the organization is accurate and appropriate.

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

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

Research Advisory Board: A research advisory board should be composed of individuals who can understand the research and/or implications of the research on the human participants and affected individuals. For many organizations this board is composed of researchers involved in research on the condition. For other organizations, 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 conditions, 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.

Scientific Advisory Board: A scientific advisory board will be a blend of all kinds of scientists, and will focus largely on the research activities of your organization.

The responsibilities of the advisors are:

Serve as a resource about scientific and medical issues, including opinions on methods of managing the condition
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