Patients in Fibrolamellar Age Range (12-18) Now Recommended to Participate in Adult Clinical Trials
(December, 2016). The FDA is now recommending enrolling adolescents in disease/target-appropriate adult oncology clinical trials. This is an important step that will open up more clinical trials to fibrolamellar patients. Learn more
New Diagnostic Test for Fibrolamellar
(December, 2016) A new test, developed at Mayo Clinic, uses FISH technology
to identify the fusion gene DNAJB1-PRKACA,
reported in fibrolamellar carcinomas.
Fibrolamellar Registry On Stage at White House as Cancer Moonshot Bill is Signed
(December, 2016) This past week the US House and Senate passed the 21st Century Cures Act. This provides $5 billion for the NIH for The Precision Medicine Initiative, Brain Initiative and the Moonshot on Cancer – a legislation established earlier this year aiming to make therapies more available and improving early stage prevention. Its emphasis was given to pediatric, adolescent and young adult cancers, including fibrolamellar. FibroRegistry board member Elana Simon attended the ceremony
, standing on stage with House Speaker Nancy Pelosi, Vice President Joe Biden, other patients and members of Congress, as President Obama signed the bill.
Fibrolamellar Registry Launch Garners Strong Response (December, 2016) Just two weeks into its launch, the FibroRegistry has seen an extremely strong response, with dozens of patients in the United States and around the world taking part. In fact, 23 states, 8 countries and 3 continents are represented. Outreach efforts to patients will continue throughout the next year, along with new efforts to reach relevant physicians and medical organizations.
The Fibrolamellar Registry Goes Live
The Fibrolamellar Registry team proudly announces that the survey is now open for participants. Patients and/or their family representatives are invited to take the survey
and help bring us closer to our goals of better treatments, diagnostics and, one day, a cure.
Fibrolamellar Registry Wins Approval from the Genetical Alliance Institutional Review Board
(September, 2016) Following nearly two years of development, the Fibrolamellar Registry wins approval from the Genetic Alliance’s IRB to launch
as a scientific study.
New Fibrolamellar Drug Discovery Program Launches
(September, 2016). Blueprint Medicines announces
new drug discovery program targeting the fibrolamellar chimera. Research will be conducted in the lab of Dr. Sanford Simon, Rockefeller University professor, president of the Fibrolamellar Registry.
Clinical Trial for Fibrolamellar Enters Phase 2
A trial testing whether a compound called ENMD-2076 is a safe and effective treatment for fibrolamellar meets its Phase 1 endpoint with 16 patients and proceeds
to a second stage.
“Humans of New York” Features Fibrolamellar Researcher
(May, 2016) Fibrolamellar researcher/ surgeon Dr. Michael La Quaglia, chair of Pediatric Surgery at Memorial Sloan Kettering and scientific collaborator of the FibroRegistry team, is featured in the Humans of New York Pediatric Cancer Series on Facebook
Fibrolamellar Registry Joins Cancer Coalition Lobbying Effort
(May, 2016) Fibrolamellar patients and families are joining the Rally Foundation for Childhood Cancer Research and the Nicholas Conor Institute to support their efforts to have the Department of Defense include funding for young adult and pediatric cancer. Click here to get involved!
Fibrolamellar Highlighted at Vatican International Cancer Conference
(April, 2016) Fibrolamellar researcher/ Registry director Elana Simon spoke about fibrolamellar at the Third Annual International Cancer Conference, held at The Vatican, in Rome, to an international audience of clergy, medical researchers and others about the importance of funding rare pediatric and young adult cancer research. More