Program areas at Endbraincancer Initiative
Disease education/awareness/outreach program: patient disease education, awareness and outreach of disease via creation of educational materials that are housed on our website as well as provided to the brain tumor community via digital and social media, disease educational online meetings/events, patient roundtables, on-on-one email interactions, in-person, zoom meetings, facetime, small group meetings, speaking engagements, live streaming on facebook, creation of educational videos, fact sheets, content and articles via large scale distribution through our media partners. In 2023, ebci provided over 18 million opportunities to educate patients, caregivers, families, industry and the general public via the above efforts.
Brain tumor patient advocacy and access program: consult on the creation of clinical trial protocols and policy that incorporates the 'patient voice'. Work with insurance companies and medicare to increase coverage of treatment options and reimbursement amounts for fda approved treatments. Collaborate with other brain tumor organizations to advance treatment options for brain tumors, brain cancer, and metastasized disease to the brain community.
Direct connect patient program & services: ebci directly and personally connects patients, caregivers & families to top brain tumor specialists for 2nd/3rd/4th opinions, surgery and treatment options and to principal investigators, clinical trials and translational medicine. Ebci currently has 7500+ touch points per month and opportunities to educate and directly serve over 900 patients, caregivers and families annually on a one-on-one basis including case management.