How is FORGE funded?
FORGE has been funded through recurring donations, fundraising events, and, to date, significant personal contributions from our trustees and directors. We have invested our own resources because we believe deeply in our mission and the families we serve.
As FORGE grows, we are expanding our funding model to include grants, corporate partnerships, philanthropic support, and venture philanthropy.
Venture philanthropy is an approach where charities invest in the development of promising new treatments alongside biotechnology companies and researchers. This approach aims not only to accelerate therapies for patients but also to generate sustainable returns that can be reinvested into FORGE’s mission. It is an innovative model that has helped transform treatment development in other rare diseases, and one we believe has enormous potential for children living with SAVI and related autoinflammatory diseases.
Can I apply for funding from FORGE?
FORGE does not currently operate an open research grant program.
However, we encourage researchers and clinicians working on SAVI and other interferonopathies to get in touch. Patient and parent organisations can play an important role in helping research progress by supporting collaboration, navigating regulatory and ethical processes, and connecting researchers with the patient community.
If you have an innovative project, we’d love to hear from you. Where there is a will, there is often a way.
What kind of work will FORGE fund?
Our priority is supporting research and innovation in rare paediatric autoinflammatory diseases, particularly SAVI.
As our funding grows, we aim to provide targeted support for:
- Small research grants
- Specialist equipment and laboratory resources
- Strategic investment in therapeutic development, including innovative funding models such as Special Purpose Vehicles (SPVs), where appropriate
Our focus is on helping promising ideas become real-world treatments.
Can FORGE co-fund projects?
Yes. We are happy to work alongside other charities, foundations, government agencies, philanthropic organisations and industry partners to support high-impact projects.
We believe collaboration delivers better outcomes and welcome opportunities to combine funding, expertise and networks to accelerate research and improve the lives of children and families affected by rare autoinflammatory diseases.
Current priorities:
SAVI Patient registry
We’re setting up a global registry to collect basic SAVI patient demographic data. Initially, we will focus on understanding how SAVI affects daily life. In the future, we’ll track aspects such as natural history, clinical signs, and treatment responses.
Baricitinib licence extension
Our goal is to extend the licence for
baricitinib, a JAK1/JAK2 inhibitor, to include SAVI patients. This will ensure it’s accessible to everyone who needs it.
Layperson summaries
of SAVI research. We’re creating simple, easy-to-understand summaries of published papers on SAVI syndrome to provide helpful resources for patients and their carers.
Epidemiological study
We’re collaborating with Genomics England and the 100,000 Genomes Project to investigate the prevalence of SAVI. This isn’t
for screening but to document how many people have this genetic mutation.
Our partnership with Imperial College London helps ensure the research is
comprehensive and impactful.
AI model for SAVI
We’re developing an AI model trained on all available medical literature about SAVI. This model is designed to interact with patients
and researchers, providing valuable insights that may otherwise have been
overlooked.
These collaborations and projects will advance SAVI research and improve
patient outcomes through global partnerships and shared knowledge. We’re
also collaborating with pharmaceutical companies, including Ilya Pharma and
Alnylam to help bring novel therapies to patients.
Download your guide to grant applications
Are you and FORGE a good match?
If you’ve reviewed our priorities and read the info pack but are unsure about applying, consider sending us a summary of your project and ideas. If your research has the potential to lead to breakthroughs in rare genetic diseases, we’d love to hear from you and can arrange an informal chat to understand more about your potential proposal.
Even if we can’t offer a grant at this time, we’d like to keep your details on file and check in with you from time to time. This way, you can update us on your progress, and we can tell you if there are other ways we can support your research goal.
Other opportunities you might be interested in:
Want to talk?
We’d love to hear about any research ideas or aspirations you have that could change the lives of people living with rare genetic diseases. We’re here to answer any questions you might have about our plans for supporting this research.
By connecting with others globally who share a passion for improving outcomes for rare genetic diseases, we can create a community where everyone benefits. Most importantly, our work will support and empower patients.
We’re looking forward to hearing from you to explore how we can work together.
