Living Donor Advocacy

A Living Donor Advocate does not actively recruit and encourage people to become living organ donors. Like a Victim’s Advocate, a Living Donor Advocate educates, protects and supports any individual interested in becoming a living donor, is a living donor, or who has been affected by living donor-related issues.

Advocacy is not about cheerleading, but about providing information necessary to making an informed decision, while ensuring protections and respecting human rights. This requires a deeper understanding of living donors beyond that which is usually portrayed in popular culture and mass media.

One does not have to be an expert in every facet of living donation, however. It’s perfectly acceptable to focus only on the increasing psychological support for living donors, if that’s what you believe is most important. Others choose to fight for better Informed Consent, or the creation of a Living Donor Registry to finally, after fifty-plus years, begin to amass real data on living donors’ short and long-term health and well-being.

If you’re a living donor who wants their voice to be heard, you can take the time to fill out the survey on Living Donors Matter’s website. All info will be kept confidential unless permission is specifically given.

So, where to begin? Follow LD101’s twitter feed, post the LD101 url on your website or blog (or in the comments section of an article), ‘Like’ the Living Donors Matter, inc. Facebook page, and/or follow the “Living Donors are People Too” blog.

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.
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.
Join UNOS/OPTN regional mailing list, participate in teleconferences, provide feedback for proposed policies, and attend meetings.

The country is divided into 11 OPTN regions. Each region has staff and representatives and holds its own meetings and teleconferences, and those regional representatives can be contacted with concerns and suggestions. The national OPTN committees also have meetings, and OPTN regularly posts proposed policies up for public comment, as required by federal law.

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.

U.S. Newspaper List

Contact State or Federal Lawmakers, as well as Public Policy Organizations.

This one is so big, we gave it its own page

Talk to Other Grassroots, Independent Living Donor Advocates.

Volunteer. Offer to help with research, writing tweets or blog posts. Offer to organize a newsletter. Submit merchandise designs (hint, hint). Ask what they need. 

To Be Continued….