Advances in genetic, bone and brain tumor research are at the heart of our priorities. In direct contact with the doctors at the reference and competence centers in Paris, we try every year to provide new patients and information to the doctors so that they can continue their research.
This research is then presented each year at the association’s Annual General Meeting in Paris, to share the medical advances made by the doctors and their advice on what to do, such as screening, looking for a special marker in a blood test and so on. In recent years, great medical advances have been presented, with the hope, for example, of an inhibitor treatment.
Unfortunately, medical research requires a great deal of funding, and our little-known association is still battling with the laboratories, in close collaboration with the doctors, to develop new treatments.
in close collaboration with doctors, to develop these very expensive treatments and authorize their distribution to the patients who need them.
It’s the number of patients in an association that carries its weight and plays a vital role in overcoming the reluctance of laboratories who don’t consider this disease to be important enough, given its rarity and small number of patients.
By becoming a member of this association, you’ll be helping to increase its weight in the medical world, and you’ll have the opportunity to attend the Annual General Meeting each year, so you can have a front-row seat to the latest medical advances made by the doctors, ask them questions and receive a report summarizing all their remarks. These are important documents which you can find in your member’s area by joining our association.