4th Share4Rare Call4Projects to drive rare disease patient-driven research studies

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The deadline for submitting proposals for new projects is July 15th of this year.

Collaborative research into rare diseases stands as one of the cornerstones of Share4Rare. Year after year, we endeavour to foster the development of research projects in this field that focus on the needs of patients and caregivers, ensuring access to the generation of new knowledge regardless of their background or language.

In this context, we are launching a new call for proposals for the Share4Rare Call4Projects, our fourth edition, encouraging patient organisations and research groups to submit their research project proposals for implementation on our platform.

We aim to contribute to a deeper understanding of rare diseases through qualitative or quantitative research. The projects that we implement at Share4Rare can focus on various aspects, such as the impact of the disease on the quality of life of patients or people who live with them, the description of the natural history of the disease, the prognosis of the disease, the creation of patient registries, etc.

The projects must be self-financed, so the promoting entities (patient associations and/or research groups) will assume the costs for implementing the study on the platform. Since Fundació per a la Recerca Sant Joan de Déu (FSJD) is a non-profit entity, the fees for implementation services are adjusted to the cost price. Among the services included in the implementation of the project are the presentation of the project to the Ethics Committee, the configuration of the online questionnaires for data collection, the accompaniment of the research team and participants throughout the study and the preparation of a results report to facilitate their later publication.

Advancing rare disease research cannot happen without the involvement of patients, families, and, of course, patient associations, which channel and consolidate all efforts. Collaborate with Share4Rare to enhance understanding of your disease!

To submit your project proposal:

1. Please, carefully read the Call4Projects Call Guidelines.
2. Complete the Contact Form, the Application Form, and the Financial Commitment Letter.
3. Send these three documents to info@share4rare.org before July 15th, 2024, at 5:00 PM (Spanish Peninsula Time).

If you have any doubts or questions regarding the submission process, please don't hesitate to contact us via email at info@share4rare.org. We will assist you with whatever you need and clarify all your doubts throughout the process.

 

Topics
Patient advocacy
Research
Share4Rare