| Take Action If you want to learn more about living donors and donation, meet other living donors, and advocate for changes in transplant law and public policy, here are some places to start.
1. Join mailing lists and forums. (LD101 offers no opinions or guarantees regarding any public outlet. Listing is simply for information purposes only.) Living Donors Online Message Boards. National Kidney Foundation Living Donation email list or forums. IHateDialysis has extensive forums too, but the site is really geared toward those with kidney disease and not living donors, although they lurk around too.
2. Follow living donor related articles, blog posts, etc. on the web and comment on them. Google Alerts will deliver one email per day on articles and sites containing the key words of choice. Many sites or blogs offer rss feeds that can be added to an email program as well.
3. Join UNOS/OPTN regional mailing list, participate in teleconferences, provide feedback for proposed policies, and attend meetings.
4. Compose "Letters to the Editor" or contact media personnel. Most print publications accept letters from readers. If a living donor or transplant-related article or column appears, compose such a letter/email and submit it. It's also acceptable to contact the writer/reporter directly with your thoughts.
5. Contact State Lawmakers. Many transplant related issues, such as ratification of the latest version of UAGA are dealt with on the state level. Many insurance issues, such as the ability for insurance companies to exclude someone based on a pre-existing condition also can be resolved via state laws.
6. Contact Federal Lawmakers: House of Representatives - Find Your State Representative House Leaders, including Speaker of the House, Office of the Majority Leader, Office of the Republican Leader, and House Majority Whip. House Committee on Science and Technology, specifically the Subcommittee on Research and Science Education, responsible for "research and development relating to health, biomedical, and nutritional programs" (e.g. stem cell research which could be used to grow donor organs)
Senate - Find your Senator (search in upper right corner of page) Committee on Commerce, Science and Transportation, whose jurisdiction includes "Science, engineering, and technology research and development and policy." Includes stem cell research and the health insurance industry. Committee on Health, Education, Labor and Pensions, specifically Health Policy, which oversees the Department of Health and Human Services (DHHS), and public health and health insurance statutes.
Secretary of Health Kathleen Sebelius. Office of the Secretary number - 202-690-7000 Department of Health and Human Services (DHHS), parent department of HRSA, OPTN, etc. The U.S. Department of Health
and Human Services
Advisory Committee on Organ Transplantation (ACOT), established by DHHS as an independent voice for issues and policies of organ transplantation. Attend and testify at twice a year meetings, or Contact specific members.
Organ Procurement and Transplantation Network (OPTN). Provide feedback regarding proposed policy changes, or sign-up to receive public comment notices. Also, join a committee, attend a committee event, or contact a committee member. Find your OPTN region, and contact the Councillor and Administrator (upper right of the page)
United Network for Organ Sharing (UNOS). OPTN's private contractor to administer the national organ transplant waiting list. Contact Key Staff, or Board of Directors.
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