The following is a guest blog post from John Hopper, President of the Fibrolamellar Cancer Foundation, a NORD Member Organization.
Huge thanks to NORD leadership! Fibrolamellar Cancer was just approved as one of the Social Security Administration Compassionate Allowance diseases. Why? Because great people like Mary Dunkle and Paul Melmeyer knew this was important to the Fibrolamellar Cancer Foundation (FCF) and reached out, encouraging us to consider applying. We would have had no clue how to navigate this process without NORD’s help. Bonus was that a key member of the NCATS was at the presentation FCF gave to the SSA. Paul helped set up a one-on-one conversation with myself and the NCATS leader which has led to the potential of working closely with this organization.
This is the type of help and guidance we benefit from by being a NORD member organization. From the FCF and all the adolescents and young adults fighting fibrolamellar, thanks to all of you at NORD who were instrumental in this recent approval – and for all you do.