World IBD events - 2013
Date: month of May
Place: throughout the country
A wide range of activities will be organised to raise awareness about IBD such as participation in artistic-gastronomical events organised through out Argentina. The Fundation Más Vida will organise a cooking class on “IBD and nutrition” and give further informative talks about IBD both on radio and television.
Starting from 10 May Más Vida will also prepare a IBD kit including medical information, symptoms of IBD, WHO disability indicators, results of the IMPACT study etc. This kit will be distributed to patients so that they can present it to their local Ministry of Health, Educatoin, Labour, healthcare professional etc.
For mor information please visit our website (in Spanish only): http://www.masvida.org.ar/
Date: 12 May
Place: Sao Paulo and regional chapters
As in previous years ABCD will organise a charity walk in the Ibirapuera Park, Sao Paulo as one of its main event as part of a wider media campaign for awareness raising (during the week between 12 and 19). Other walks and media advertisements will also take place in our chapters around the country. More info: http://www.abcd.org.br/
Date: 19 and 20 May
In Bulgaria, we've planned to celebrate the World IBD Day with two major events - an awareness raising campaign in the Sofia's center and a meeting open for discussions and exchange of opinions between doctors and patients.
On the 19th, through a provocative campaing that is to take place on two key locations in the Bulgaria's capital city, we'll try to attract passers-by and provide them with leaflets and more information regarding IBD, its symptoms and the challanges patients with IBD face. On the following day, the 20th, a meeting between doctors, nurses, patients and people generaly interested in or affected by IBD is sheaduled in one of the hospitals most active in IBD treatment in Bulgaria. It aim - to discuss and find ways to increase the quality of life of people affected by IBD.
More info at: www.babkuk.org/
Date: month of May
Place: across Canada
In celebration of World IBD Day, the Crohn’s and Colitis Foundation of Canada (CCFC) is proud to announce Canada’s first endowed chair in ulcerative colitis research. Established at McMaster University’s Michael G. DeGroote School of Medicine, one of the world’s top 10 research programs in digestive health research, this $3.5 million endowment will shed light onto a disease that impacts more than 100,000 Canadians, and millions more worldwide.
This new position has attracted a world-class scientist as its first holder. Dr. Walter Reinisch is a clinician scientist and currently an associate professor of gastroenterology at the Medical University of Vienna in his native Austria. After final approvals the position will be named the Audrey Campbell chair in Ulcerative Colitis at McMaster University.
Dr. Kevin Glasgow, CEO of the CCFC, said at a May 15th announcement, that the new position is being established because medical research is the only hope for finding cures and better treatments for inflammatory bowel diseases.
Glasgow added: “CCFC is particularly proud to partner with McMaster to unveil this unique Chair during May. Sunday, May 19 is World IBD Day and the impact of this important investment in ulcerative colitis research is really global in scope and relevance.”
More info: http://www.ccfc.ca/
Date: 25 May
Place: Prague, Ladronka park
The Czech IBD association is organizing an awareness raising event to show the public the challenges and needs of people living with IBD. The event will be attended by people with IBD, doctors, nurses, journalists and the general public. During the event we will install a serpent statute made out of toilet paper rolls to symbolize the disease’s severity. We will announce the “best IBD nurse in the Czech republic” and there will also be competition games and an accompanying programme. More info at: (in Czech)
Date: 16 May
On the occasion of World IBD Day (official date 19 May) the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) organised a stakeholder round table discussion at the European Parliament as part of a wider awareness raising campaign within the EU institutions. Representatives from the medical community such as Prof. R Stockbrugger (United European Gastroenterologists) and Prof. M. Vecchi (San Donato Policlinico - Milano) debated along with Members of the European Parliament (MEP Cofferati, MEP Panayotova ) and EFCCA chairman, M Greco about concrete measures and actions that need to be put in place in order to ensure full citizenship of people with IBD. The debate initiates a public consultation process to develop recommendations for more effective governance to ensure that social, economic and health aspects of people living with IBD are considered in all policies. A Wiki platform will enable stakeholders to feed into the consultation process and the results will be represented at the global awareness raising at a conference taking place in October this year.
More info: www.efcca.org
Date: 16 May
Traditionally our national day, mainly based on communication and fundraising, takes place the first weekend of October. This year, AFA decided to join the World lbd day, with the goal of raising the general public’s awareness of the burden of the disease but also on lobbying to carry patient’s voices to Healthcare decision makers.
In France, ulcerative colitis is considered as the "small" IBD, so, the afa is launching a new communication campaign which will be unveiled at a press conference on May 16th.
On behalf of all the patients and their relatives, AFA is submitting a letter of inquiry on the urgency of the situation in IBD to Marisol Touraine, Minister of Social Affairs and Health.
For more information: www.afa.asso.fr
Download: letter to Ministry
Date: month of May
Place: across Greece
The Attica's Society of Crohn's Disease's and Ulcerative's Colitis' patients (ASCC) has organised the following activities on the occasion of World IBD Day:
The presentation aimed on raising awareness on IBD, the challenges patients face in their everyday lives in relation to food and the importance it has on assisting the medication and thus prolonging the periods of remission of IBD.
Date: 11 May
The Italian IBD association is organising an IBD information event on 11 May. For more information please visit:
Date: end of May
Crohn's and Colitis New Zealand is promoting the results of the New Zealand IMPACT survey with a photographic exhibition in Parliament at the end of May. Sam Sword is a Christchurch based photographer with Crohn's disease. He took a series of emotionally charged photos to graphically illustrate his journey with IBD. These moving photos emphasise the devastating statistics from the New Zealand IMPACT survey. Support groups will be raising public awareness of IBD in their regions, holding displays in shopping complexes and hospitals.”
For more information: http://crohnsandcolitis.org.nz/
Date: 15 May
The Norwegian IBD association (LMF) will organise a Webinar with medical treatments for IBD as a main topic. There will be information stands set up at Stavanger University Hospital, at the local assosiations and at a new hospital in Oslo. Moreover some activities with the medical industry are foreseen.
More info at: www.lmfnorge.no
Date: 19 May
Place: Katowice and Lodz
The problem we’re facing this year is that 19.05 is a public holiday (Whitsun Day) so everything is closed and we can’t rent any seminar room. The only option are outdoor activities. Therefore on 19 May the Silesian Branch of J-elita is organizing an event in Chorzow Park (the biggest in the area) in the Katowice.
We will build “a paper path with empty paper rolls put one next to the other (or one empty and one full). A string will go through all the rolls in case of strong wind. The way will lead to one of the public toilets together with a motto “help people with IBD to get to the toilet”. We will ask passers -by to join the construction so that they can learn what IBD is. In the end all the full rolls will be given to the hospital.
In the city of Łódź J-elita will join the annual students’ festival with a one hour happening. This will include the show of children’ band together with a fashion show of toilet creations (made of toilet paper). Unfortunately the event will be much smaller than it had been previously planned because of the holiday and no possibility for renting a part of the department store.
Let’s hope that the weather will not disappoint us! For more information please check: http://www.j-elita.org.pl/
Furthermore on 18 May the association "Appetite for Life" is organizing a "Appetite Nutrition Workshops" when it wishes to present the role and discuss great effectiveness of using enteral and parenteral nutrition in IBD. On 19th of May we wish to organize a charity concert to draw public and media attention to problems of IBD patients' quality of life. They are fed artificially simultaneously and sometimes have to spend 6 weeks in hospital instead of taking artificial nutrition at home.
You can find more information on our website www.apetytnazycie.org/en.
Date: 19 May
The Birmingham Children’s Hospital is hosting an IBD symposium, organised by IBD patients, for IBD patients and their supporters. The event will feature talks from a variety of different patients on topics including managing fatigue with IBD, going to university with your condition and much more. Plus a talk from the foul bowel author and Crohn's patient John Bradley. We plan on having group activities as well as dinner in the evening for all who wish to attend.
For more info from co-organiser Claire Hunt: email@example.com
Date: 19 May
Charity walk to raise awareness, get together to have a fun day out and raise some cash for this fantastic cause. Family-friendly activities based at the Hospitium (Museum Gardens) and a 5km charity walk through York. This year's fun and games will have an international theme, as it's also World IBD Day. Join us to walk, or to help as a volunteer http://www.nacc.org.uk/ content/general/ CCwalk.asp#top
Place: social media
CCFA will be highlighting World IBD Day with a campaign on social media for a few days leading up to May 19, which kicks off Digestive Disease Week. For more information please visit:
CCFA has also prepared a new Public Service Announcement (PSA) which can be viewed at the following link: http://www.youtube.com/user/CCFA?feature=watch.
World IBD Day events - 2012
The IBD patient organization “Mas Vida” is a still a very young association and has been constituted in September 2010 with the aim to promote and initiate studies, research and other types of activities that contribute to awareness raising of the disease and to improve the diagnosis, treatment and quality of life of IBD patients.
On 19 May it organized a press conference in Buenos Aires where journalists from specialist media and mainstream national media were invited. Two gastroenterologist (one specializing in pediatrics) provided information about Crohn’s disease and Ulcerative Colitis. This was followed by a patient testimonial explaining what it means to live with IBD in your daily life.
The press conference took place in a horse riding school in Buenos Aires and journalists were invited to see for themselves how it feels to cope with a new situation. They were asked to ride a horse (with the assistance of teachers) with the aim to draw an unusual parallel of the challenges faced of people living with IBD and how to take control of the situation.
Read the first press clipping for the event:
For more information please visit Mas Vida’s website: www.masvida.org.ar
In Australia we had a whole month of Crohn’s and Colitis awareness in May. This year our program carried the ‘Can’t Wait’ theme, conveying the key message that the IBD community can’t wait, and not just in regards to toilet facilities.
We can’t wait for shorter gaps between first consultation and final, correct diagnosis of IBD; for better access to specialist treatment and care; for the government to highlight IBD as a priority in its health programs; for employers and schools to acknowledge IBD as a valid medical condition and to properly accommodate those who are living with it; and for the general public to be more aware of IBD so that we can talk about it without feeling embarrassed or stigmatised. Visit our Can't Wait website for more information.
As part of the celebration of the World IBD Day, 19 May 2012, the Brazilian Association for Colitis and Crohn Disease (ABCD) organised the VII Walking for Crohn and Colitis at Ibirapuera Park, São Paulo city. With this activity we aimed to create public awareness about the importance of an early diagnosis and correct treatment of IBD. The walk will gather IBD patients, their relatives, doctors and those supporting the cause.
“ABCD is proud to join the international entities in the effort to spread the knowledge about IBD around the world, which forms part of our mission” says Dr. Flavio Steinwurz, ABCD President and a member of WGO (World Gastroenterology Organisation) IBD task force.
The ABCD initiative is internationally recognized for gathering hundreds of people and attracting IBD patients from all over Brazil.
One in 160 Canadians is living with Crohn's disease or ulcerative colitis, collectively known as IBD (inflammatory bowel disease).
IBD is most frequently diagnosed between the ages of 15 and 30, with the typical onset being in the early 20s. This is a crucial time in a young person’s life – they’re starting school or careers, getting into more seriously relationships – all of which can be disrupted by a painful, often embarrassing chronic illness.
This May 19, on World IBD Day, young Canadians living with Crohn’s and colitis have sported a World IBD Day badge on their social media channels to raise awareness about the impact of IBD on youth. Please support them by following these three simple steps:
- - Visit www.picbadges.com and search for World IBD Day.
- - Post your World IBD Day PicBadge to all of your social media profiles with this message (or one of your own): “Wear your badge on May 19 to raise awareness about the worldwide impact of inflammatory bowel disease.”
- - Encourage your family and friends to do the same!
The Bulgarian Crohn’s association is currently in the process of being formally constituted. The idea to form an association has been initiated by several Crohn’s patients who felt that there was a lack of information about Crohn’s disease and that there was a need for coordinated actions to improve the situations of people living with Crohn’s disease in Bulgaria. They initially met through a Facebook group and decided to push things forward. A first meeting of patients and three renowned medical IBD specialists took place in Sofia on 23 March 2012. Both sides, patients and doctors, were keen to collaborate in order to raise more awareness about the disease amongst the public, patients and the medical profession. The Crohn’s group has also been in touch with EFCCA as they would like to join and exchange much need information and experiences with “older” members and to support activities planned for IBD World Day.
Croatian Crohn’s and Ulcerative Colitis Association celebrated World IBD Day on the Flower Square in Zagreb on May 19th 2012. The HUCUK volunteers handed out leaflets and brochures to those interested, and also answered questions about inflammatory bowel disease (IBD) and the work of our Association.
The aim of this action was to raise public awareness on Crohn’s disease and Ulcerative Colitis in Croatia, and draw attention to the problems that the patients, estimated number being four thousand to five thousand, have.
You can see the slide show of the whole event on You Tube:
EFCCA – collaborating with the European Parliament to gain recognition of difficulties faced by people living with IBD.
Since 2010 EFCCA has been an active supporter of World IBD Day. EFCCA represents 27 patient associations throughout Europe and its main focus with regard to World IBD Day is to target policy makers of the European institutions such as the European Commission and the European Parliament in order to increase awareness about IBD and to improve life of the over 2.2 million people living with IBD in Europe.
This year EFCCA will host an awareness raising event in the European Parliament supported by several Members of the European Parliament (MEPs) who will also support an initiative to create more attention on the difficulties that IBD patients have to face and, in particular on the lack of harmonized recognition, across the 27 European Member States, of the rights and needs of people living with IBD.
The support that EFCCA is receiving from the members of the European Parliament is not only a symbolic action but also a clear statement in favor of IBD people and patients in general and it might be the first step of a legislative process able to fill the lack of harmonization and to eradicate the discriminations on IBD in the territory of the European Union.
For more information please visit our website: www.efcca.org
afa is celebrating its 30th anniversary in the fight against IBD. This fight is to support medical research by financing projects selected by our Scientific Committee – up to 5 million euros – in fundamental as well as clinical research. The number of scientific publications is impressive thanks to the impulse of afa.
This fight is to support the patients and their children, relatives and friends: with 22 delegations, we stay in touch with their problems by giving out information, by supporting them, whether psychologically, medically or socially. This fight is to represent the patients, to be their voice and to express their life experience to political and medical decision makers; to raise public awareness through communication campaigns (2012 is the 3rd).
Traditionally, our National IBD Day is in October. This 6th October 2012, the theme will be « Show us your guts! » promoting sports and other cultural events throughout France. We hope to set aside two dates in 2013 : one in May to develop awareness and the other in October to raise funds.
Be sure to see us with EFCCA in Brussels on 15th May to launch the question proposals to the European Parliament during the World IBD Day.
For more information, see our website: www.afa.asso.fr
"Crohn's Disease and Ulcerative Colitis are not a TABOO!"
That was the message with which the "Attica's Society of Crohn's Disease and Ulcerative Colitis Patients" (ASCC), celebrated World IBD Day, in a public awareness event on Saturday, May 19, 2012 downtown Athens in Korai Square, with the support of the Municipality of Athens and under the auspices of the Ministry of Health and Welfare. The members of the ASCC, informed the public about the daily difficulties that the patients are facing, the importance of early diagnosis as well as the new available therapies.During the event "Motus Terrae", a street theater group, participated with a specially designed theatrical performance, presenting in an original way the practical and psychological problems faced by patients in their daily life.
Please watch the video: http://www.hellasnews.tv/site/index.php?option=com_seyret&Itemid=90
This is the first time Ireland will celebrate World IBD Day. The Irish Society for Colitis and Crohns Disease (ISCC) is aiming to raise awareness of IBD in Ireland.
There will be an awareness event in Beaumont Hospital, Dublin which will further aim to promote IBD along with having a patient representative present.
The ISCC Youth Group is hosting a charity zorbing event on May 19th in Dublin. In conjunction with the the society the Youth Group will also launch a "Top Tips" information leaflet based around the themes of well being and sport. We are also delighted to be launching our Facebook and Twitter accounts. We will also take the opportunity of World IBD Day to raise further awareness within the Irish media.
The highlight of our World IBD Day activities will be a “toilet paper” battle – in this way we want to get attention from decision-makers to our problems such as lack of access to new biological therapies.
"We’re joking among ourselves that the voice coming from the toilet is barely audible, because the most common and troublesome symptom of IBD is persistent diarrhoea. Hence the idea to celebrate our Day is for the IBD patients kind of “coming out of the shadow” and also, in a cheerful and attractive way showing our iflammatory problems "- said Dr Malgorzata Mossakowska, vice president of J-elita.
In Warsaw we start on the 17th with a press conference. Then, on the 19th there will be lectures and an outdoor event in the hospital’s gardens. Participants will benefit from consultation with specialists, talk to other patients, visit the stands of exhibitors, go first aid course, watch performances by dance groups and learn the salsa dance steps. The jury will choose the winner of the most interesting “toilet costume”. Picnic will be ended with the toilet paper battle.
Another toilet paper battle will happen in Katowice. Anyone interested can take part in the fight (just bring a colorful rolls of toilet paper and stick them in your hands - as a distinctive sign!). It will be held punctually at 17.00. Last year it attracted more than 250 people and looked like this: http://youtu.be/lXCGzc0gfKs
Wroclaw is the third city where we will celebrate the 19th of May. To show the patients that the doctors thoroughly support our activities they will present several lectures for the patients and answer their questions.
As far as Krakow is concerned, our members organized and took part in a photo session entitled “WC out – coming out from the toilet” The pictures will be presented in all the other cities and published in several magazines.
For more information please visit our website:
On World IBD Day, the Society for IBD will organize a major set of communication activities. The Communication campaign will run under the slogan "Currently indisposed - thanks for understanding" and is intended to improve:
- - understanding and knowledge of symptoms, because early detection and diagnosis can prevent later complications and
- - understanding of people with IBD and their specific needs, because this disease affects quality of life in all aspect and requires a lot of adjustment of lifestyle.
With this campaign the IBD society wants also to reach out to the professionals, particularly general practitioners and urge them towards early detection, faster diagnosis and comprehensive treatment of people with IBD.
The special feature of this communication campaign will be a series of short street theater performances that will try to present the problems of IBD to passers-by in an interesting manner. The performances are planned on the following times:
- Saturday, 12 May at 10.30 and at 12.30 in the center of Ljubljana,
- Tuesday 15 May at 12.30 in the center of Ljubljana,
- Friday, 18 May at 12.30 in the center of Maribor,
- Saturday, 19 May at 10 30 and at 12.30 in the town.
Please watch video link to street theatre performance on the story of Prince Erasmus Predjamski who died on a toilet hit by a cannon ball and betrayed by his vallet.
Among the most important communication activities will be the setting up of the human size silhouettes in more frequented events and places. These silhouettes represent a variety of roles, occupations of people (eg. physicians) who are currently indisposed due to the departure to the toilet. This is also explained by the sign placed on the silhouettes. In this video a silhouette was placed in a busy weekend market:http://youtu.be/ey6SYDaTyJs
For more information please visit our website: http://www.kvcb.si/
Members of the Norwegian patient association’s youth group together with the leader of the national Parliament’s Health Committee and a gastroenterologist will be participating in a popular Breakfast television show. One of the focus will be on IBD and on the work our association is doing. The gastroenterologist will stay on the programme for the entire show (150 minutes).
Other activities on World IBD Day include information stands in several cities in Norway (a huge stand at Central Station in Oslo) with roll-up's, toilets, toilet-papers, members in same dresses, balloons and giveaways.
In the evening there will also be a IBD medical webinar which will be transmitted via internet. Patients may follow the webinar and send in their questions via Facebook.
We will also launch our new web-site at www.lmfnorge.no as well as a new application for android- and i-phones "Porselensappen" with an interactive application for finding and registering toilets, linked to google maps. It's free for everyone, and has informations about IBD and LMF.
For more information please visit our website: www.lmfnorge.no
We have dedicated the whole of the month of May to raising awareness of IBD. Our theme this year is IBD Sports and Fitness, using the public interest in the London Olympics to highlight how IBD affects fitness and participation in Sport. Through a special website we conducted a survey of nearly 1,000 members and have found that about one third do not take part in any exercise or sporting activities and a quarter said their fitness was low. 80% had had to give up a sport at some time either temporarily or permanently. You can find the full results in a report on our special campaign website www.ibdsportsandfitness.co.uk
Take the Challenge!
64% of the survey respondents have agreed to set themselves a challenge for May to do some form of exercise or sport. Hundreds of people will be walking for Crohn’s and Colitis UK in York (May 13) and London (May 26) .
Five sporting champions who have IBD have spoken about their life with Crohn’s or Colitis to help us with our media campaign. You can see their stories on our campaign website (embedded link to www.ibdsportsandfitness.co.uk)
Check out this great article: Olympic kayaker modifies training to deal with Crohn's
Carrie Johnson will make her third Olympic team in women's sprint kayaking. After the London Games, she will study to be a veterinarian....
View the complete article at http://www.freep.com/apps/pbcs.dll/article?AID=/201206091238/USAT-SPORTS-OLYMPICS-LONDON-CANOE/USAT55480360
On 15th May 2012 Ex England Rugby Captain Lewis Moody and National Champion Power Lifter Henry Tosh took part in a media campaign working towards raising the awareness of Crohn’s disease and Colitis.
Both athletes spoke of how they personally manage these incurable conditions, how common the conditions are and where any sufferers can go to find out more information. The media outlets ranged from Sky Sports News to BBC Radio 2, with the interviews reaching a staggering 154 stations and an audience of over 51,000,000 people. With the disease affecting 1 person in 250 they hope that this will have had a life changing affect on hundreds of thousands of people.
Lewis spoke of the day stating, ‘I am absolutely delighted with the outcome of our campaign so far. Being such an understated illness I hope that we have helped people to understand it a little better. Most importantly I hope people now know where they can go for advice and help, something I wish I had the access to in the early stages of my condition.’
Staff at the charity’s offices in St Albans held a working lunch for their corporate supporters and Champions and then introduced their new mascot figure, Teddy Tum Tum, to their staff and supporters to mark Crohn’s and Colitis month and celebrate World IBD Day this week.
On 29th May it is anticipated that over 700 people will participate in a national Walk from Victoria Embankment Gardens, to raise awareness and funds for the charity and its work. The charity is still looking for volunteers to help– “We need a team of potential volunteers to wear the Teddy suit – the kids love it, but it can get a bit hot!” admitted Suzi Clark, director of Marketing and Fundraising. The charity and its supporters have already organised major Walks in Rutland and York this month, engaging over 700 people as participants or volunteers.
Please visit www.crohnsandcolitis.org.uk/walks to find out more about its Walks or visit http://www.ibdsportandfitness.co.uk to see film clips of its Champions and download its report on IBD: Sport and Fitness..
This year the Israel Foundation for Crohn’s Disease and Ulcerative Colitis (CCFI) is focusing its work around the subject of well-being and wellness with the aim to bring an inclusive and comprehensive approach to treating and living with IBD. Activities planned for this year will put an emphasis on the importance of a healthy life style as well as the body and mind and will promote wellness and well being.
Specifically for the World IBD Day CCFI will launch a month long media campaign that promotes awareness for IBD World Day and will carry out 4x4 Jeep trips event for children living with IBD.
For more information please visit the CCFI website or write to firstname.lastname@example.org
Information coming soon.....
Crohn's and Colitis New Zealand is planning a media-rich campaign for World IBD Day on 16th May, commencing with our ‘purple ribbon’ event in the grounds of Parliament. Over 100 local members and family, wearing purple t-shirts will join together to form a purple ribbon and then reform to spell IBD.
We hope to have photos available almost immediately – so keep an eye out on our website – www.crohnsandcolitis.org.nz. Local experts will join the throng, together with 18 year old Michael Robinson – one of our local heroes. Michael has recently had a purple ribbon tattoo on his arm, in recognition of his little brother, who at nine years old is struggling with Crohn’s disease. Our parliamentary host and Member of Parliament, Dr Jackie Blue, will be presented with the IMPACT report. Four other local heroes will represent us around the country, all are being interviewed by their regional media.
National media is being targeted with the results of the IMPACT report, and the IMPACT questionnaire will be launched on our website.
Local support groups are planning to get out and about in their communities, with display and information stands. Wearing purple t-shirts, they will hand out pamphlets, give out purple ribbons and increase public knowledge of these devastating diseases.”
For more information please visit our website: www.crohnsandcolitis.org.nz
Information coming soon.....