Reception and evaluation of research projects for 2026
One of Share4Rare's most important pillars is research into rare diseases. Another pillar is its community: patients, caregivers, and patient organizations from more than 50 countries.
So, in order to encourage collaborative research, Share4Rare is opening the period for reception and evaluation of research projects based on data reported by patients for 2026.
The objective is to promote the generation of scientific knowledge about rare diseases. To achive this, we provide support to projects that require the services offered on the Share4Rare platform.
The research proposal submission period will open on February 25th, 2026 and close on May 31st, 2026.
What are the benefits of conducting your research project at Share4Rare?
Share4Rare offers a secure and private infrastructure for collecting self-reported data from patients or their caregivers. Furthermore, thanks to our dedicated team, we can provide professional support throughout the entire project implementation and development process: advice from experts, implementation of questionnaire, recruitment, statistical analysis, results dissemination, and more.
The services are intended for patient organizations, academic institutions, or any interested parties to promote research in rare diseases, in which the patient is the key element for collecting relevant information about the disease.
In addition, patient organizations that are members of the Share4Rare community will receive a 20% reduction on service costs.
What kind of projects can you submit?
Projects submitted must require data that are self-reported by patients or their caregivers in the field of rare diseases. Projects can be addressed to collect quantitative or qualitative data and target different goals, such as: the description of the natural history of the disease, patient registries, analysis of the burden of disease, quality of life of patients and/or their caregivers, creation and/or validation of scales, correlation between patient-reported data and clinical imaging data, etc.
In the Share4Rare Research Services Portfolio, in addition to the services offered, you will find examples of the different types of projects that can be implemented through the Share4Rare platform.
What steps do you need to follow to submit your proposal?
First of all, we recommend that you read the Guidelines for the Reception and Evaluation of Research Projects for 2026, where you will find all the necessary information to submit your proposal.
If you already have a project in mind or want to carry one out, and it fits with the guidelines outlined here, the next step is to complete and send the Research Services Request Form to info@share4rare.org in Spanish, Catalan, or English. If you have any questions, you can send them to us in the same email you send with the form. Remember that the deadline for submitting the form is May 31st, 2026.
The document will be reviewed, and after an online meeting to assess the project's needs and agree on the terms of the services, a quote will be sent. Once you have reviewed and accepted the quote, you must notify us by email and send the completed Financial Commitment Letter back to info@share4rare.org.
If you have any questions about submitting your application, please contact us at info@share4rare.org. We'll help you in any way we can and answer all your questions throughout the process.
Links of interest
- Guidelines for the Reception and Evaluation of Research Projects for 2026
- Research Services Request Form
- Financial Commitment Letter
- Share4Rare Research Services Portfolio
