Go behind the scenes of this year’s Drug Development Forum
When Dan Perrien attended his first FOP Drug Development Forum (DDF), he met two young children with fibrodysplasia ossificans progressiva (FOP). He watched them run and play like any other children would — while the adults in the room were on high alert to make sure they didn’t fall or run into someone, potentially triggering a flare-up.
The tension of that moment stuck with him. As a parent himself, he deeply empathized with the parents’ struggle between letting their children freely play and protecting them.
Dan had been familiar with FOP his whole career as a researcher specializing in bone biology, but meeting families at events like the DDF transformed his work. The patients he encountered opened his eyes to the reality of living with FOP every day.
“With a disease that’s this dramatic and rare, it really helps to humanize it,” he says.
This summer, he joined researchers from around the world to attend the sixth annual DDF in Stockholm, Sweden. The DDF brings together biotech and pharmaceutical companies, academic researchers and clinician scientists to collaborate and advance FOP research. It’s an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options.
“I really can’t exaggerate the value the DDF has had in growing the research community and in cross-pollinating ideas and data with researchers around the world,” Daniel says.
With the first-ever treatment for FOP approved in three countries and five active FOP clinical trials, there is an abundance of preclinical research with the potential to be translated into safe and effective new medicines. “It’s clear we’re still discovering new pathways, new molecules, new drugs that can reduce FOP bone,” Dan says.
He left this year’s DDF feeling like the “horizon is bright” for the future of FOP treatments. But he’s also quick to note we haven’t arrived yet. Until there are more treatments and a cure, Dan and his fellow researchers around the world rely on consistent support to ensure research and trials don’t pause.
Your generosity keeps this critical work moving forward. Thanks to monthly supporters like you, we have made significant strides in research and paved the way for major clinical trials.
Thank you for your continued generosity that makes events like the DDF possible and advances research! Together, we can reach a cure faster and work toward a more hopeful future.
Credits : IFOPA
FOP trust is on mission to create awareness about this rare disease and we strive to help the patients and their families.
