Fibrolamellar Communities, Groups and Fund-Raisers
1. There are two Facebook groups for fibrolamellar patients. The FibroRegistry page is where to keep up to date on FibroRegistry and fibrolamellar news; clicking “like” will keep you abreast of all the information we post there. Another Facebook group is Fibrolamellars of the World Unite!, where you can meet fellow patients and engage in a wide range of discussions. To join this closed group, email one of the administrators.
2. FightFibrolamellar is a campaign to support fibrolamellar research at Rockefeller University, where the chimera that causes this disease was first discovered.
3. The Fibrolamellar Cancer Foundation funds selected research projects on fibrolamellar and sponsors a yearly patient gathering in Vermont.
4. The Cancer Survivors Network, part of the American Cancer Society, has a fibrolamellar-specific discussion page.
5. The Max Burdette Fibrolamellar Cancer Research Foundation is trying to raise funds to start a fibrolamellar research clinic at St. Jude’s Children’s Hospital.