Frustrated by the dearth of knowledge of and treatments for fibrolamellar?
So are we. You can be the next hero to a fibrolamellar patient! Here’s how:
Donate Your Time, Tissue or Funds
The Fibrolamellar Registry is seeking motivated patients, parents, siblings, friends, spouses, caregivers — anyone who wants to do good for a great cause and have hands-on impact on fibrolamellar research, including those with no science backgrounds. The FightFibrolamellar campaign is looking for patients, their families or friends to assist lab researchers as they work to cure this disease. If you are at least 16 years old and have a minimum of three weeks available, please contact them to help find the lab that’s right for you.
The Registry is partners with the Fibrolamellar Tissue Repository at the Rockefeller University which seeks fibrolamellar patients’ tissue samples, obtained during surgery, to pursue its research. It is also in need of blood samples from all fibrolamellar patients. When you participate in the Fibrolamellar Registry you have the option of allowing both your Registry data and your donated tissue to be combined to give researchers unparalleled amount of information to assist their studies. Please click here to contact the scientists at the Repository if you would like to donate tissue or blood.
We welcome your financial donations, large and small. Click here to go to our Paypal page now.