It is crystal-clear that the challenges and opportunities of Crohn’s disease and ulcerative colitis do not respect national borders.
New York, New York (Vocus) April 30, 2010
The international community of IBD patient groups will join thousands of gastroenterologists from around the world to launch the first international “World IBD Day” dedicated to Crohn’s disease and ulcerative colitis during the 2010 Digestive Disease Week (DDW) annual conference (May 2 -5) in New Orleans.
IBD, which stands for inflammatory bowel disease, is comprised of Crohn’s disease and ulcerative colitis - two serious, chronic digestive diseases that affect five million people worldwide (1.4 in the U.S. alone). Crohn’s disease and ulcerative colitis directly affect the digestive system and cause intestinal tissue to become inflamed, form sores and bleed easily. There is no cure, no known cause, and little public understanding of the pain and chronic suffering which IBD patients courageously cope with every day of their lives.
The World IBD Day event, led by patient organizations representing 27 countries on four continents, will officially be celebrated on May 19, 2010. Patient groups from the United States, Canada, Australia, 23 European nations, and Brazil are working in collaboration with the World Gastroenterology Organization (WGO) to draw awareness to IBD. At DDW, the patient group organizers will present the event’s new website and Twitter account aimed at increasing worldwide visibility of these disabling digestive diseases that are often misunderstood or unknown by the general public. Educational materials and other tools designed to increase public awareness will be distributed at the conference.
“Our Foundation is thrilled to be officially joining forces with an international group of patient-based organizations who share in our goals of promoting IBD research and supporting patients and families with the education they need to do well,” says Rick Geswell, President of the Crohn’s & Colitis Foundation of America. “It is crystal-clear that the challenges and opportunities of Crohn’s disease and ulcerative colitis do not respect national borders.”
“We believe there are synergies in research endeavors and opportunities to ease patient suffering by sharing information and approaches with a world-wide community. World IBD Day is a great symbol for what we can achieve in a broader, global context,” added Marco Greco, Chairman of the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), which represents 23 European nations.
From a patient perspective, IBD can be isolating and it is important for others to know they are not alone. To complement World IBD efforts, celebrities such as NHL hockey player Fernando Pisani are helping to decrease the isolation and stigma of IBD by sharing their experiences. Since his diagnosis of ulcerative colitis, the Edmonton Oiler right winger has become a leading advocate for people with IBD in Canada.
“Hockey players often take their health for granted,” says Pisani. “That all changed for me in 2005 when I started feeling sick. I lost about 40 pounds and lots of blood. You play 80 to 100 hockey games a year with pre-season and the playoffs and you start to feel invincible, then something like this comes along and knocks you out."
IBD patient groups are also joining forces for the first time with the World Gastroenterology Organization, thus bringing together patient and medical organizations. Every year, the WGO launches a digestive health campaign entitled “The World Digestive Health Day (WDHD)” and this year it will focus on raising awareness about Crohn’s disease and ulcerative colitis.
“While IBD is considered a disease of developed nations through the latter half of the 20th century, it now affects persons on all continents,” says Dr. Charles Bernstein, campaign leader of WGO’s World Digestive Health Day 2010. “The evolution of IBD in emerging nations may provide clues to its etiology, so it is incumbent upon us to ensure that diagnosis and management of IBD can be optimized everywhere. It is my honor to chair this effort on behalf of the World Gastroenterology Organization and to lend our support to the IBD patient groups organizing World IBD Day.”
Collectively, the patient organizations leading the World IBD Day campaign have contributed well in excess of $250 million to basic and clinical IBD research over the past 43 years. This has resulted in the development of new drugs and diagnostics, improving the prospects of patients for longer and healthier lives. But the search for better approaches with fewer side effects, and ultimately, prevention and cure is more ambitious than ever, as scientific advances in genomics and genetics allow for more profound discoveries.
About Crohn’s Disease and Ulcerative Colitis (IBD)
•Although IBD is treatable with a number of medications and surgeries, it is still not curable.
•Diagnosis can be complicated and take many years.
•The incidence of Crohn’s disease and ulcerative have increased steadily in the past 50 years – especially among youth.
•The age of disease onset typically peaks in adolescent and young adult years, with a second peak in adults over the age of 60.
•Children diagnosed with Crohn’s disease and ulcerative colitis are vulnerable to growth delays with irreversible consequences, making pediatric IBD a critical health issue.
•IBD often imposes a significant impact on the quality of life through ongoing symptoms, reduced ability to work, social stigma, bathroom access, difficulty with physical intimacy, and a restriction in career choices.
Please visit http://www.worldibdday.com for more information, including links to the patient groups listed below. The patient organizations will also be represented at booth 1550 during Digestive Disease Week.
Crohn’s & Colitis Foundation of America (CCFA)
Marie Granieri, Senior Director of Marketing
(00) 1 212 685 3440
Crohn’s and Colitis Foundation of Canada (CCFC)
Jacqueline Waldorf, Manager of Marketing and Communications
(00) 1 800 387 1479
Crohn’s and Colitis Australia (CCA)
Alison McClelland, PR and Communications Manager
(011) 61 3 9815 1266
Association Brazilia Colitis Ulcerosa & Crohns (ABCD)
Dr. Flavio Steinwurtz
(011) 55 3064 2992
National Association for Colitis and Crohn's Disease (NACC)
(44) 0 1727 844296
European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA)
(011) 39 338 923 9700
World Gastroenterology Association (WGO)
(011) 49 89 4141 9241