Core Objectives
Guided by our CORE Objectives We Plan to….
1. BUILD – collaborative relationships with all vascular anomaly stakeholders. Together with expertise from our Medical & Scientific Advisory Committee (MSAC) and out Patient & Family Advisory Committee (PFAC), identify the important research questions, and assist our “users” in developing strategic research plans to successfully achieve the desired objectives and outcomes.
2. CONNECT - facilitate initiation of successful research projects by making it possible for stakeholders across the globe to connect in the pursuit of common goals all aimed at improving the lives of those living with vascular anomalies. Including novel basic and translational research studies, robust registries, natural history studies, outcomes studies, and clinical trials.
3. SUPPORT, FACILITATE, and BE INVOLVED – in every step of the research process, from study design, concept, and FDA approval through to delivery of safe and effective treatments and standards of care.
4. GROW – an army of clinician-scientists, clinicians, and researchers who are dedicated to the field of vascular anomalies.
5. ESTABLISH – a place to call HOME at the National Institute of Health where our researchers and patient communities are represented and will complement the advancement of scientific discovery of other more common diseases in the pursuit of identifying cures for all.
6. IMPROVE AND STRENGTHEN RESEARCH ADVOCACY - efforts of individual patient advocacy organizations by encouraging outreach to diverse populations, assisting in translation of scientific support including patient-friendly disease description and treatment guidelines, composing and disseminating patient friendly scientific updates on new therapies in research /early development.
7. DEVELOP and support RESEARCH READY PATIENTS - and their families. Provide education and support on the importance of participating in research. As well as, provide our community with translatable and most up-to-date research discoveries, novel treatments, and future goals.
Operational Model
Medical and Scientific Advisory Council
Medical and Scientific Advisory Council
Medical and Scientific Advisory Council
TBD – invitations will be sent out to NAVBO, ISSVA, VASCERN and CaNVAS
Areas of Focus:
· Research Projects: from concept and design to delivery of care
· Outreach to promote collaboration amongst all researchers and clinicians
· Other Stakeholder Entities (including FDA, NIH, and other government agencies)
· Engaging early investigators and clinicians
· Communication and collaboration with our PFAC
Patient and Families Advisory Council
Medical and Scientific Advisory Council
Medical and Scientific Advisory Council
TBD but will include invitations to leaders or a patient/family ambassador from one of the patient advocacy groups.
Areas of Focus:
· Research Projects: from concept and design to delivery of care
· Outreach to promote collaboration amongst all researchers and clinicians
· Other Stakeholder Entities (including FDA, NIH, and other government agencies)
· Engaging early investigators and clinicians
· Communication and collaboration with our PFAC
Our Partners
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