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Support for associations

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Our expertise

The Foundation For Rare Diseases advises and supports patient associations in the structuring, implementation and deployment of their actions in favor of research. All our consulting activities for associations are free of charge. The interventions explained below are not exhaustive.

The foundation helps you to structure your research activities

Personalized assessment

Analysis of the association's research activities

Proposal of actions in accordance with the objectives of the association

Development of an implementation plan

Training

Popularization of research work in progress (Example with the AFSA association)

Popularization of the scientific process and the organization of research

Awareness of research issues

Provision of advice sheets

Analysis of the association's research activities

The Foundation helps you navigate the research continuum

The foundation helps you to surround yourself with relevant profiles

Search for experts

Constitution of your Scientific Council, steering committees, selection committees, etc.

Contact with research teams

Advice for the organization of scientific workshops

Support for the development of your e-health projects

Setting up research projects

Identification of key players

Search for partners

Help with writing

Study of possible financing channels

Search for patrons, etc.

The Foundation helps you mobilize experts around your issues

The Foundation manages your calls for projects free of charge

Calls for projects coordination and disinterested management

Set-up and coordination: drafting of the call for proposals and forms, eligibility analysis, setting up of a selection committee, search for external experts, etc.

Administrative management: agreements, accounting follow-up, etc.

Follow-up of your laureates: analysis of scientific progress, vigilance on the use of funds entrusted to the researcher, etc.

Information

Overview of research

Bibliographic analysis

Speak at your conferences, scientific councils, boards of directors, industry days, family days, etc.

The Foundation relays important news to you

The Foundation helps you reach your audience

Communication

Relaying your research-related events

Relay of your calls for projects

Help to promote your activities or your winners

Popularization of research results, etc.

They recommend us

Involvement in research is one of the pillars of action of many rare disease associations that we welcome to the Alliance. This is why we believe it is essential that specific support with a dedicated contact person at the Foundation For Rare Diseases be offered to associations in coordination with the tools already existing within our collective. This commitment has resulted in a very operational cooperation between the Alliance Maladies Rares and the Foundation Maladies Rares throughout the year 2020 with the holding of two Web meetings dedicated to the question of research in the Humanities and Social Sciences and to the mobilization of students in an associative research strategy or the important involvement of the Foundation in several sequences of the Autumn Universities, a major training moment for patient associations (animation or intervention in 7 proposed workshops of the Universities). This cooperation will obviously be consolidated and developed over the next few years, in particular with work to propose a new research guide for associations.

Mrs Marie-Pierre BICHET
President of the Rare Disease Alliance until 2021

Our Association HPN-AM France - Medullary Aplasia, created in 2004, raises funds to support research on Paroxysmal Nocturnal Hemoglobinuria (PNH) and Idiopathic Medullary Aplasia (IMA) which are two serious rare blood diseases that are "cousins" and often concomitant. We finance research grants and training for young doctors interested in these subjects. We approached the Foundation For Rare Diseases (RMF) to help us find laureates with projects that would advance knowledge in these specialized and very specific areas. We worked closely with Ms. Lyne Valentino to develop a Call for Projects, to disseminate it, and to have a panel of specialists evaluate the responses that were received. Finally, we were able to award a grant of 10,000 euros to a doctor whose project, concerning an optimization of the treatment of HPN, was retained by our Association after its validation by the FMR. Then, the FMR followed for us the progress of our laureate's project and kept us informed of its progress.

We greatly appreciated the quality and responsiveness of our interactions with FMR throughout this process, and we thank them very much.

HPN-AM Association France
To know more

Your contact : Laura Benkemoun

Regional Manager South-West & Research Advisor for associations

Contact Laura by mail