Finding a Cure
In a race against time, the search for a cure is global.
The search for a treatment for FOP is continuing at both academic institutions and pharmaceutical labs and around the world, with the main sites being in the US, United Kingdom, Argentina, Japan, Italy, France, and the Netherlands.
These are exciting and hopeful times for those living with FOP. Although there is still no effective and available treatment for everyone living with FOP, we have promising results, a number of clinical trials underway, and companies publsihing promising results.
We have HOPE.
The Drug Development Forum
To further knowledge and understanding of FOP, the Drug Development Forum (DDF) was founded. This key international meeting is organised by the IFOPA. The first event was held in Boston, MA, USA, in 2014.
The DDF brings together scientists, clinicians, pharmaceutical companies, regulators, and patient representatives from around the world. Its goal is to accelerate research and drug development for FOP by encouraging open collaboration and sharing the latest discoveries.
Aims of the DDF:
* Advance research collaboration through sharing relevant and timely FOP data
* Solve key issues facing FOP drug development
* Strengthen the FOP research network and stimulate new ideas to advance therapeutic drug development
The DDF has been held in different countries around the world. It features scientific presentations, discussions about clinical trials, and updates from biotech and pharmaceutical companies working on FOP treatments. Importantly, it also highlights the role of patients and advocacy groups, ensuring the lived experience of people with FOP helps shape research priorities and trial design.
Chris has represented FOP Friends at a number of these meetings.
You can learn more here: DDF
