In 2020, CLOVES Syndrome Community was awarded a $600,000, three year grant from the Chan Zuckerberg Initiative’s Rare As One Network. This network is a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Rare As One grant will provide CSC with capacity-building tools, resources, funding, training, and support, to strengthen our expanding patient community and scientific goals.
Goals
CLOVES Syndrome Community is working to create a patient-led collaborative research network in order to broaden the medical knowledge base, accelerate treatment options, and improve quality of life for people with CLOVES and PIK3CA Related Conditions.
What is a collaborative research network and why should it be patient-led?
A patient-led collaborative research network pulls together a community of stakeholders – including people with specific diseases, their family members, researchers, and physicians – to discover and prioritize critical research questions. The research network relies on the collective voice to identify the most pressing questions and knowledge gaps about a disease. It then recruits the most qualified researchers to help answer these questions and to conduct these studies.
Why patient-led? Patients are the heart and driving force behind CSC. We believe that patients and families are the experts in their life and their condition. We believe that no one is more motivated than patients to drive progress against their disease. We believe that there is power in collaboration and in breaking down systemic barriers.
How are we going to get there?
CLOVES Syndrome Community has identified a series of milestones that will get us to our goal.
2020
✔Conducted 30+ stakeholder interviews to understand the research landscape
✔Reviewed published literature on CLOVES + PROS, and posting the links on our website
✔Created a slide deck of one-page summaries of each of the published papers
✔Built a drug repurposing database
✔Awarded $20,000 to Dr. Ralitsa Madsen, postdoctoral fellow in Professor Bart Vanhaesebroeck’s research group at University College London Cancer Institute for the project titled “The systems biology of activating PIK3CA mutations in mosaic endothelial cell models.”
2021
✔Hired four part-time staff members
✔Collaborated on research tool development and research strategy
✔Awarded $10,000 to Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center research to support the study titled “Vascular anomalies communication” (VACOM)
✔Awarded $25,000 to Ana Angulo-Urarte for the project titled “Identifying the molecular impact of PIK3CA variants in PROS towards stratification of patients and personalized medicine.”
✔Awarded $25,000 to Dr. Robert Semple for the project titled “Human Pluripotent Stem Cells as a Model to Interrogate Pathogenesis and Developmental Origins of CLOVES”
Up Next
- Bi-Monthly PIK3CA Related Conditions Research Roundtable
- Research Gaps Analysis with Odylia Therapeutics
- Patient Video Education/Awareness Project
- Development of Patient Friendly Educational Materials About Research
- Launch Patient Registry with NORD
- Crowdsource and Prioritize Research Studies
- Organize CLOVES Management Guidelines meeting
- Regularly disseminate information on the latest research and treatments.
- Annual Research Grant RFP
How can you help?
- Sign up for the newsletter
- Help us raise funds for research
- Apply to join the CLOVES Community Family Advisory Council
- Contribute to research efforts by joining AllStripes
As the Collaborative Research Network progresses we will share additional ways to get involved, sign up here to stay up to date on new opportunities.
We believe in the power of the collective. We believe that together, we can make a change in the lives of people with CLOVES and PIK3CA Related Conditions.