Finding a Cure
In a race against time, the search for a cure is international
The search for a treatment for FOP is continuing at a number of academic institutions around the world, with the main sites being in the US, United Kingdom, Argentina, Japan, Italy, France, and the Netherlands.
In order to further the knowledge and understanding of FOP, the Drug Development Forum was set up. The first event was held in Boston, MA, USA in 2014 and hosted by the IFOPA. The event was created to bring together the best minds in FOP researchers, from universities, academic institutions, and bio-pharmaceutical companies around the world, to share knowledge and discuss the important issues and questions surrounding the challenges they face in trying to find a treatment and a cure for FOP.
The aims of the DDF are to:
* Advance research collaboration through the sharing of relevant and timely FOP data
*Solve key issues facing FOP drug development
*Strengthen the FOP research network and stimulate new ideas to help advance therapeutic drug development
Chris represented FOP Friends when he attended the 4th Drug Development Forum in November 2019 which was held in Florida, USA. There were representatives and families there from 19 different countries.
Chris sat on a panel with other patients and families affected by FOP to answer questions about how FOP impact their lives, and their family life.
Here, some of the attendees reflect on the importance of such events for the FOP community: DDF 2019, Florida, USA
There are currently eight clinical trials underway in the search for a treatment for FOP (September 2020). Some are still in the very early stages of phase 1/healthy volunteers, while others are moving slowly towards applying for approval. The IFOPA has a comprehensive page about Clinical Trials for FOP.
FOP Friends does not endorse or promote any trial or drug treatment path. If you are considering participating in a clinical trial, please contact your medical practitioner for further guidance.
The National Institute for Health Research has more information on trials available in the UK: Be Part of Research
For general guidance and information to support your decision on whether to take part in a clinical trial, please visit the NHS website: https://www.nhs.uk/conditions/clinical-trials/