Organization: THE CHOLANGIOCARCINOMA FOUNDATION
Mission: TO FIND A CURE FOR AND IMPROVE THE QUALITY OF LIFE OF THOSE AFFECTED BY CHOLANGIOCARCINOMA.
Activities: RESEARCH THE CHOLANGIOCARCINOMA FOUNDATION (CCF) CONTINUES TO FOCUS ON COLLABORATIVE RESEARCH EFFORTS WITH MEDICAL, SCIENTIFIC, ACADEMIC, REGULATORY, AND NOT- FOR-PROFIT PARTNERS. DURING THE YEAR ENDED JUNE 30, 2020, THE ORGANIZATION FUNDED EFFORTS TO ENHANCE AND RESEARCH CHOLANGIOCARCINOMA GENOMICS DATA. THE ORGANIZATION HAS ALSO CONTINUED THE SUPPORT OF A SPECIMEN REPOSITORY.
ADVOCACY THE CHOLANGIOCARCINOMA FOUNDATION IS COMMITTED TO PROVIDING SERVICES TO PATIENTS AND THEIR FAMILIES AFFECTED BY THIS DEVASTATING DISEASE. BOTH PATIENTS AND THE PROFESSIONAL COMMUNITY ARE EDUCATED THROUGH THE ORGANIZATION'S ANNUAL CONFERENCE, WEBSITE, AND BOOK, 100 QUESTIONS AND ANSWERS ABOUT CHOLANGIOCARCINOMA. THE ORGANIZATION ALSO PROVIDES DISEASE EDUCATION, EMOTIONAL SUPPORT, AND A MULTITUDE OF RESOURCES THROUGH A DISCUSSION BOARD, SOCIAL MEDIA SITES, AND RESPONSES TO DAILY CALLS AND EMAILS. THROUGH INITIATIVES SUCH AS MUTATIONS MATTER, INTERNATIONAL PATIENT REGISTRY, ACTION ALERTS, AND THE BILIARY INFORMATION CARD, PATIENTS AND THEIR CAREGIVERS ARE GIVEN THE OPPORTUNITY TO PARTICIPATE IN RESEARCH EFFORTS WHILE BEING EMPOWERED TO TAKE PART IN THEIR OWN HEALTHCARE. THE ORGANIZATION ALSO PARTNERS WITH LIKE-MINDED ORGANIZATIONS TO SPREAD AWARENESS ABOUT THE CHALLENGES FACED BY THE RARE DISEASE COMMUNITY.
NTEE category: Medical Research
Secondary category: Voluntary Health Associations & Medical Disciplines