Advisory Boards

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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


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.

"We do not have terms for those on our Medical Advisory Board (MAB). Some members have been in place since we instituted the MAB. However, there have been some changes over time as individuals felt the need to step down and others have been added. Currently, we have a mix of two bench researchers (PhD's), four clinicians (MD's), and one NP.

Our MAB members provide input on our website content, review grant proposals to help us determine what research to fund, and provide oversight for our Registry and Biobank projects. Since they are volunteers, we try to be respectful of their time."

Ginny Mason
Inflammatory Breast Cancer Research Foundation
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.

Responsibilities

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

Determining Chairs

Each advisory board should have a chair who serves as the leader of the board. The chairs should be the person who is most knowledgeable about the condition, most interested in furthering research, and most willing to serve.

Adding New Members

Organizations have a variety of new ways of adding new members to their Advisory Boards. Some methods include:

  • The organization lets the current members of the board know that they are looking for an additional member with certain specialities or to meet a certain demographic need. The board then recommends someone based on this criteria. The Board of Directors takes a formal vote to determine if they would like to extend an invitation to join the board to this person. The invitation is then formally extended to this person via a letter signed by both the Executive Director and the chair of the advisory board.
  • New board members are invited after consultation between the Director and Executive Staff.

Additional Resources

  • Board of Advisors Guidelines are an overview when an advisory board may be useful to an organization, what roles advisors may play, who may be useful as an advisor, and how to go about creating an advisory board.
  • Parent's Guide: Serving on Boards and Committees takes a look at questions that parents of children with disabilities may have when joining a board or committee. The guide has two main sections: deciding to join and things to keep in mind after you join. You may also view the text here.
  • A Guide to Volunteer Board Service is a review about making the right match in serving on a volunteer board of directors and obtaining the information to make an informed decision.


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