We guide you on the path to new therapies
The path to developing a new therapy for rare diseases is long and often complicated. Which therapeutic approaches are actually possible and which have the best chance of success from an objective point of view? Where can I find the right researchers or other affected patients? What does it mean to be “research ready”? Who can I apply to for funding and what do I have to consider?
Through our practical experience, we work with you to find answers to these questions and support you every step of the way in developing new therapies.
Networking with and of rare disease patient groups
In order to make research into a rare disease possible at all, it is important to join together as patients. We network you as an affected person with a patient group. Likewise, we network patient groups with comparable requirements with each other in order to pursue joint research approaches.
"We as scientists often have difficulties working together with patients. The language alone is too different. You meet a huge need there."
Networking of patient groups, clinics & research institutions on rare diseases
For patient organisations, it is difficult or impossible to find the right researchers for “their” disease. And researchers often do not have access to patients with rare diseases either.
We connect patient groups with the right experts and bring patients and researchers together. We have a large network of self-help (umbrella) organisations, research institutions and clinics.
CureRare translates complex medical issues and makes them understandable even for laypeople.
Organisational consulting for patient groups
We advise you on the organisational development of your patient organisation. We explain to you which research path makes sense for your disease and how best to follow it.
For this, we show you the necessary steps and the most efficient sequence to reach a therapy. We accompany the implementation of this roadmap and bring suitable researchers on board.
Support for the submission of funding and research proposals for rare diseases
CureRare has thorough knowledge of the international funding landscape in the field of rare diseases.
We help with funding and research applications for rare diseases. For example, we assist with research grant applications to fund initial laboratory trials (so-called “proof of concept”).
Funding for rare diseases can also be applied for conferences and workshops between patient representatives and researchers.
Research advice & patient management
On request, CureRare takes over the planning, organisation and management of projects for the development of a therapy for rare diseases.
This also includes professional patient management, which is now a prerequisite for all funding applications.
We take over the coordination of the consortium partners (patient organisations, research organisations and clinics) and ensure that research projects are continued even if the contact persons change, for example, within a patient organisation. Let’s design a process that meets your needs and budget.
Workshops
We believe that the key to therapy is cooperation among the different stakeholders. To improve this in the different phases of a research project, we offer workshops in which patient organisations and researchers participate together.
"The workshop with CureRare finally allowed us as patients to address our most pressing questions to a panel of scientists. It was surprising for us as a family to experience the personal engagement of the researchers first-hand."
"Patients + Scientist = Therapy?" in Belgrade, 2022
Workshop Location Determination:
What options are there for research projects and what do I have to consider?
At the very beginning, there is a clarifying discussion and workshop to determine the situation: patients learn which options of cooperation with other stakeholders are available to them and which forms of organisation and cooperation exist. Of course, we help with the further steps using our expertise and our network.
Workshop Roadmapping:
What steps do I need to take to develop a therapy for a rare disease?
In our roadmapping workshops, a roadmap towards therapy can first be prepared in the patient association or research group. We make suggestions and show examples that have already been successful. Needs of the participants are visualised here and form the basis of the further path.
Workshop Cooperation:
What can we do to reach our goal faster together?
With our collaboration workshops, we bring patients, scientists and clinicians together at one table. Here we discuss challenges of collaboration and develop strategies to move forward quickly and successfully on the path to therapy development with Allen’s contribution. We moderate and “translate” between the parties so that the path and the goal are understood and supported by Allen.
Would you like to learn more about CureRare as a patient representative or researcher?
Contact us. We look forward to hearing from you!
Claudio Cinquemani
info@curerare.de