Councils and Other Advisory Bodies

Agencies and other associations often have opportunities for members of the public or for health advocates to participate in committees or councils. These may be task forces or special interest groups assigned to focus on issues such as informed consent, privacy, patient recruiting, or education. They may also be charged with writing policies or position papers.

These councils may be part of the alliances and coalition we talked about above. They may also report to government agencies or to professional associations such as those for medical specialties. The opportunities for you and your organization may stem from a mandate for public or stakeholder involvement.

Getting Involved

As with coalitions, learn which agencies and associations are involved with care for the condition you support. The NIH, for example, has institutes under its umbrella that focus on particular groups of disorders. The medical specialties involved in the care your members receive also have professional associations of their own.

One place you can start is your local, county, or state agency Board - these agencies will have many diverse missions, of course, but you may find local opportunities related to your organization's mission. Californians can checkthis listing. Genetic Alliance has more information about government agencies.

Professional organizations for physicians and scientists typically focus on a medical specialty. Specialty generally means at the level at which physicians might train after completing medical school - for example, "neurosurgery" or "orthopedics" - as opposed to a specific expertise they might develop in fellowship or as a provider, such as "spinal surgery." Here is a short list to get you started thinking about professional organizations:

• American Society of Human Genetics
• American College of Medical Genetics
• American Academy of Ophthalmology
• American Academy of Dermatology
• American Academy of Pediatrics

Start with Web sites and other information for the groups in the areas that provide care to your members. View conference programs when available, too - they will usually list the committee meetings being held at the conference. One pathway for involvement with these groups is exhibition at their annual meetings. As your group becomes more involved with policy or research, you may come to make presentations at some of those meetings.

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