CCFA's Impact In 2015, CCFA raised more than $80 million for its mission-critical IBD research, professional education and training, and patient support and education programs.
CCFA has defined itself by sponsoring the best and brightest researchers over many decades -- seeding the field with studies around the mysteries of inflammatory bowel disease (IBD). Our cumulative investment of more than $267 million has defined these diseases and transformed the clinical management and scientific understanding of Crohn's disease and ulcerative colitis.
We consistently meet the standards of organizations that monitor charities, including the Better Business Bureau's Wise Giving Alliance, Guidestar, Charity Watch, and Charity Navigator.
Here are the actions we have taken and the impact we achieve on a daily basis with your support:
- Provided a cumulative total of more than $267 million for Crohn's disease and ulcerative colitis research.
- CCFA's 2015 research portfolio included $28.4 million in funding for 192 research projects.
- Maintain and support several professional scientific committees to identify appropriate and effective research projects.
- With thousands of grants and fellowships awarded CCFA has played a role in every major scientific breakthrough in IBD, from generating data that led to new therapies to the discovery of the first gene for Crohn's disease, and breakthroughs in our understanding of the role of the human microbiome in IBD onset and progression.
- CCFA's Clinical Trials Community educates patients and healthcare providers about clinical trials to help accelerate the drug development process.
- Priority research initiatives of CCFA include multi-institutional, multi-disciplinary, collaborative research projects targeting areas of science with a high probability of advancing treatment.
- IBD Plexus is CCFA's integrated knowledge platform designed to aggregate IBD patient information to establish the largest, most innovative research and information exchange for IBD ever created.
- Our Microbiome Initiative identified about 1,000 strains from the trillions of bacteria in the human gut that are potentially beneficial or harmful in Crohn's disease or ulcerative colitis.
- Our Genetics Initiative has helped identify over 200 genes associated with IBD, and is currently analyzing 14 high-priority genes or genetic pathways (i.e., groups of genes involved in one function) for further insights into the role genes play a role in intestinal inflammation, resistance of the intestine to infection, lymphocyte biology, the biology of inflammatory cells, intestinal barrier function, and the antiviral immune response.
- Our Pediatric RISK Study is comprised of the largest group of pediatric patients in the history of Crohn's disease. Patients have been studied from the time of diagnosis while collecting bio-materials such as DNA, blood, stool, and intestinal biopsies. Enrollment was completed in 2012 with patients at 28 centers in the US and Canada prospectively followed for disease complications and response to therapies. The RISK Study is collaborating with our Genetics and Microbiome Initiatives to predict and determine individualized IBD treatments.
- Our CCFA Partners program is an online registry forming a Patient Powered Research Network (PPRN) to capture patient, self-reported data and information that can be integrated with other research data for new insights into IBD and treatment advances.
- Produce online and print educational brochures and other materials on Crohn's disease and ulcerative colitis.
- Publish Under the Microscope -- a biannual research newsletter that educates and informs our constituents about CCFA's research activities.
- Publish Inflammatory Bowel Diseases -- a peer-reviewed healthcare professional journal, published monthly.
- Offer professional programs that teach about and expand expertise in Crohn's disease and ulcerative colitis, including our Visiting IBD Fellow and IBD Preceptorship Programs.
- In 2015, CCFA patient and professional services served almost 600,000 patients and caregivers, a 105% year over year increase.
- CCFA.org received over four million visits in 2015.
- 15,000 patients and family members attended local chapter live education programs.
- Over 300,000 individuals participated in our live and archived IBD education webcast programs.
- More than 1,300 professionals participated in the online Virtual Preceptorship program.
- 4,300 professionals logged into the ACG & CCFA IBD Circle online professional community.
- Over 2,200 professionals attended CCFA's annual "Advances in IBD" Conference.
- Provide disease-specific education, support, and treatment information through our Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help Center), staffed by helpful specialists to provide information about specific IBD resources, referrals to other organizations, or answers to questions patients might have. Monday thru Friday, 9:00 am to 5:00 pm EST.
- Actively maintain and support local chapters nationwide to reach individuals in need.
- Sponsor innovative online and other support groups for patients and family members.
- Serve over 1,100 children with Crohn's and ulcerative colitis at 12 Camp Oasis locations, including 362 that received full or half scholarships to participate.
- The IBD Help Center answered close to 13,000 inquiries via emails and phone calls in 2015.
- Over 430 patients and family members participated in our innovative online support group program.
- Over 3,700 individuals participated in our monthly Facebook Live program (including comments, likes, and shares) during 2015.
- Over 900 individuals interacted through three 2015 Twitter Chats, CCFA's newest social media program.
Quality of Care
- In 2015, CCFA established IBD Qorus, our national quality of care initiative that seeks to identify, implement and improve standard practices for treating patients with Crohn's disease and ulcerative colitis.
- IBD Qorus is developing an innovative model of patient-provider collaboration and co-facilitation of treatment that is designed to lead to enhanced health outcomes, as well as a better quality of life, for millions of IBD patients.
- By 2018, IBD Qorus™ will have recruited 30 diverse clinical sites to join its network, with the goal of treating a total of approximately 40,000 adult IBD patients.
- IBD Qorus will optimize IBD care by enabling patients to track symptoms, self-manage and communicate with their provider during and between visits, and allow for shared decision-making between patients and providers.
- IBD Qorus data will be aggregated and analyzed to identify and confirm best practices for improving quality of care and health outcomes.
- Successfully spearheaded an effort in Congress to designate every December 1-7 as Crohn's & Colitis Awareness Week.
- Launched the first ever Advocacy Walk during Crohn’s and Colits Awareness Week, resulting in seven new Members of Congress joining the Congressional Crohn’s and Colitis Caucus.
- CCFA met with federal officials at the National Institutes of Health and the Food and Drug Administration, leading to new opportunities for CCFA to partner with these agencies in medical research and patient and professional education.
- Call for increased federal funding for Crohn's disease and ulcerative colitis research and awareness programs designed to improve the lives of patients.
- Urge our legislators to implement responsible policies that can transform the lives of the more than 1.6 million Americans living with inflammatory bowel diseases.
- We have helped to significantly increase federal funding of Crohn's and colitis research through our advocacy efforts.
- We have established the Congressional Crohn's and Colitis Caucus, a bi-partisan group of Members of Congress that work together to raise awareness of inflammatory bowel diseases (IBD), support IBD medical research, and protect patient access to care. The Caucus is led in the House by Representatives Ander Crenshaw (R-FL-4) and Nita Lowey (D-NY-17) and has 71 members.
Learn more about our advocacy efforts and priorities.
Each year the Crohn's and Colitis Foundation of America (CCFA) is audited by an independent accounting firm and our financial statements are published in our annual report.