The Foundation For Rare Diseases advises and supports patient’s associations in the structuring and implementation of their actions in favor of research. The list below is not exhaustive. If you have any idea, do not hesitate to contact us.
Since its creation in 2012, the Foundation For Rare Diseases has successfully cultivated close relationships with all stakeholders in rare disease research. Drawing on the experience of its annual calls for projects, the Foundation also relies on its team of regional managers and its communications team to help you structure, deploy and promote your research activity.
The Foundation helps you structuring your research activities:
The Foundation helps you seeing more clearly in the research continuum:
The Foundation helps you surround yourself with relevant profiles:
The Foundation helps you mobilizing experts around your issues:
The Foundation manages your calls for proposals for free:
The Foundation relays you important news:
The Foundation helps you reaching your audience:
Mrs Marie-Pierre BICHET,
President of the ‘Alliance maladies rares’
Involvement in research is one of the pillars action of many rare disease associations that we welcome to the ‘Alliance maladies rares’. This is the reason why it is essential in our view that specific support with a dedicated contact at the Foundation For Rare Diseases can be offered to associations in coordination with the tools already existing within our collective.
This commitment has resulted in very operational cooperation between the ‘Alliance maladies rares’ and the Foundation For Rare Diseases throughout 2020 with the holding of two Web meetings. They were dedicated to the issue of research in the human and social sciences; the mobilization of students in an associative research strategy or the important involvement of the Foundation in several sequences of the ‘Universités d’automne’, a key moment in the training of patient associations.
This cooperation is obviously intended to be consolidated and developed during the next years with a specific effort to create a new research guide to associations.
Mrs Isabelle Coste
President of the association ‘AUTOUR DU BPAN’
Less than two years ago, my husband and I founded the association ‘Autour du BPAN’. We immediately wanted to stimulate and support medical research dedicated to the rare disease called BPAN. The world of research was foreign to us. It was therefore natural that I turned to the Foundation For Rare Diseases.
Over the months, thanks to his kindness and its explanations, the nuts and bolts of the research have been clarified. Seven months later, following his advice, ‘Autour du BPAN’ launched its first call for proposals. Two research programs have been selected and a real relationship of trust has been established.
The Foundation has a real close relationship with the associations. This is really very much appreciated. Today, we continue to work together and it is a real pleasure. Many thanks to the professionalism of the Foundation For Rare Diseases .