Started by a family, built for science
A future where CJD is found before it does damage, treated in time, and one day prevented.
Who we are
CJDbio is the research programme of a registered non-profit foundation founded in 2008 by a family affected by Creutzfeldt-Jakob disease. Today the foundation is in direct contact with more than 700 families, one of the largest communities living with genetic CJD anywhere in the world.
We bring together families, researchers, physicians, medical centres and companies developing treatments, nationally and internationally.
What we do
Advance research toward a treatment
We start new studies, build research infrastructure, run the biobank, and connect families with researchers and companies. When a promising idea needs proof of feasibility, we fund small pilot studies so researchers can compete for larger grants.
Improve diagnosis and care
We work with hospitals, medical teams and health authorities to raise awareness, speed up accurate diagnosis and improve care for patients and their families.
Open the door to clinical trials
We work with companies running trials so that families can take part, and with regulators so that new treatments can reach them sooner.
The biobank
The biobank holds samples from patients, healthy carriers and their relatives. It was set up with a hospital biobank and a national health provider, with support from the health ministry's chief scientist. A committee of senior scientists, together with the foundation, decides which research requests receive samples.
Read how researchers can use it.
Networks we belong to
- PrionAtRisk, an international consortium of more than 30 researchers in 15 countries looking for early biomarkers and treatment targets in prion disease.
- NEUROPRION, the international prion research network, a member since 2009.