19 November: World Toilet Day: a time to remember that we all have a need, but for many across the world with disabilities of all kinds there is often a pressing need. That is so for very many with Crohn's and colitis too !

We do acknowledge that in some countries there are a number of public toilets for the disabled but these require a special key from the municipalities and are often only available to those who qualify.

So particularly on this special day and in the days after we want to ask all those in charge of public toilets, whether their maintenance of the building or in the design of new toilet facilities that you consider the special needs of those people who cannot wait and those with particular requests to use toilet facilities.

Many of the patient associations provide Can't Wait Cards for their members and to the citizens we ask that if you are in a queue you give those people who ask to go ahead of you, consideration of their need.  For some, through urgency or sometimes unexpected incontinence, they cannot wait, but it is difficult to talk about it even in today's growing understanding of bodily functions.

 Within Page 6 of the October 2007 EFCCA Newsletter that can be found in this website you will find a report about the introductions of the Access Card in another country - Portugal (www.apdi.org.pt) and also some words about our EFCCA colleagues at RMT Sweden ( www.magotarm.se) who have undertaken a survey, also about the design of toilet cubicles. The results have provided some creative ideas to improve toilets in general, so providing better facilities for people with inflammatory bowel diseases and a wide range of similar conditions.

Many organisations around the world have an interest in World Toilet Day and we ask that where possible you use this day in future years to highlight the needs in your country, municipality or village.  Why is it that the taboo remains and what can you do to help?

EFCCA Chairman, Rod Mitchell, speaking from Stockholm on 19 November 2007, where the RMT (Gut) patients organisation is working with local media to publicise the needs of the peoples in Sweden, congratulated the RMT team on their high profile initiative - which has led to much local and national publicity - and also in working with the Swedish Disability Association in raising other issues. He believes that it is by working together in raising awareness both among the citizens and with the politicians at all levels, that we can make a real difference to the lives of the many peoples with chronic conditions like Crohn's and colitis, wherever they may live.

Press Release from the 5 Country Gastroenterologists-IBD Patients Survey 

PARIS, France, 30 October 2007 – Results from two recent pan-European TNS Healthcare surveys of 300 gastroenterologists and more than 1,300 inflammatory bowel disease (IBD) patients with Crohn’s disease (CD)/ulcerative colitis (UC) shed light on the quality of communication that exists between physicians and IBD patients regarding treatment expectations, outcomes and quality of life issues.

For the document visit the [download section]

Reminder : 15th United European Gastroenterology Week Paris  27 - 31 October 2007

EFCCA representatives will be attending the annual UEGW events in the Palais de Congress, Porte Maillot, Paris

The EFCCA booth is located at Level 1 N 13  among the large Exhibition facilities.

For those requiring further info about the UEGW and its extensive programme, which includes a UEGFederation

UEGW Fun Run on Sunday 28 October go to: www.uegw.org

CCFA 6th Annual Advances in the Inflammatory Bowel Diseases Conference - Adventura, Florida, USA, 6 - 9 December 2007

Our friends at CCFA have asked us to remind anyone still interested

in attending this regular annual conference with its wide ranging programme

to visit the website at : www.advancesinibd.com

BRUSSELS  - EUROPEAN DISABILITY FORUM SUCCEEDS IN AIM OF RAISING 1M SIGNATURES TO SUPPORT 10TH ANNIV CAMPAIGN IN FAVOUR OF DISABILITY DIRECTIVE

The European Disability Forum at its 10th Anniversary events in Brussels 4 - 5 October 2007 announced that more than 1 million signatures had been collected in its 1million4disability campaign so sending out a strong message from those with a disability that more needs to be done to stop discrimination and reminding the EC and member states of the work that is still needed to assist those with disabilities. 

A symbolic cheque representing 1 232 771 signatures was handed over to Margaret Wallstrom, Vice-President of the European Commission at Rond-Point Schuman, Brussels, Belgium last Thursday afternoon 5 October during the official speeches to commemorate the 10th anniversary of the EDF. 

More about the results of the campaign and linked 10th anniversary events can be found at www.edf-feph.org   

Visit the site also to learn about the outcomes of the EDF 10th year General Assembly (GA). Among the "Challenges ahead" mentioned by the long serving EDF President Yannis Vardakastanis in his closing remarks at the GA was the EDF's wish to do more in their work for those with Chronic conditions.

 
CPME - Eucomed Joint Declaration on the Cooperation between the Medical Profession and the Medical Technology Industry

SMCCV - the EFCCA Swiss member association

We are very pleased to report that SMCCV has recently awarded its first money for Research amounting to Sw Fcs 18,000 to 3 young Doctors working in the field of Crohns and Colitis - IBD.
For more info go to:
http://www.smccv.ch/index.php?option=com_content&task=view&id=27&Itemid=33

Travelling with IBD

As of March 2007 EFCCA is piloting a series of Travelling with IBD (Crohn's and Colitis) Information Fact sheets in PDF format on this website. Currently the files
are available for 10 of the 23 EFCCA member associations and are primarily in the English language. The Travelling with IBD ( inflammatory bowel disease) files can
be seen by Clicking here and can be printed. However please take note of the disclaimer contained in the individual country files.

Reminder: Transparency - EFCCA Year 2005 Annual Report + summarised financial data available on the website

Please note that for the first time and to improve transparency we have published the EFCCA Annual Report for external audiences. The document for calendar year 2005 is printed as part of the EFCCA Newsletter No 25 of October 2006. That Newsletter in whole or in part can be seen or downloaded from the PDF file by Clicking Here

The Year 2006 EFCCA Annual Report should be available from the website by end May and will similarly be contained in the EFCCA Newsletter, No 26 of May 2007

For further information please contact the EFCCA Secretariat This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

News from October's EFCCA Paris General Assembly and Association Francois Aupetit - AFA First National IBD-MICI Day [Click Here]

Belgian CCV Crohns and Colitis Patients Association

September 24, 2006 is the CCV National Study and Meeting Day, a national event from the Belgian EFCCA member association for the Flemish speaking part of Belgium (All lectures will be in Dutch).
Further information about the event can be found on the special NSOD website: www.ccv-vzw.be/nsod but this is only currently available in the Flemish language.
For more info about CCV go to www.ccv-vzw.be and for younger Belgians www.ccvj.be

Travelling with IBD

Travel insurance - reminder for people with Crohn's and colitis - IBD:

People diagnosed with Crohn's and colitis may have difficulty in arranging Travel Insurance and this may also be the case for those people with a partner or another member of the family with these conditions as exclusions may be imposed or increased premiums may be necessary.

Those seeking Travel Insurance need to declare all relevant facts to their insurers.

If "well" travellers are insured under another policy they should be aware that their policy may not cover them for losses arising from the person who is ill. Insurance companies will inform about what they will and will not cover but they need to be aware of all the facts. EFCCA member national associations may be able to assist.
They may also have travel information that will be helpful to those travelling with IBD - Crohn's disease and Ulcerative Colitis.

European Health Insurance Card - EHIC ( formerly the form E 111) :

As of 1 June 2006 the European Union updated its website about the European Health Insurance Card. It is advisable to obtain one of these cards
from your national government before travelling in the EU , European Economic Area and Switzerland. The EU site provides clear explanations and details on the availability and use of European Health Insurance Card. Visit: http://ec.europa.eu/employment_social/emplweb/news/news_en.cfm?id=161

JUNE 16 - 17, 2006 - Perspectives in Inflammatory Bowel Diseases

[Click here]

2050 - A Health Odyssey

Health First Europe has peered into the future with its first thought-provoking book and for anyone with an interest in the next 50 years of healthcare it makes very interesting reading indeed.

By 2045-2050, the average life expectancy in Europe is expected to reach
80.5 years which will put additional pressure on already strained European healthcare systems. However, by 2050, progress in medicine and patient care is expected to be spectacular, thanks to human cell and tissue engineering, telemedicine, medical robotics, miniaturisation and nanotechnology. In HFE's first official publication launched on 2 February in the European Parliament with the support of former European Health Commissioner David Byrne, and a host of MEPs from all political groups, Health First Europe (HFE) explores what healthcare will be like in the future and outlines key steps to be taken now to ensure successful healthcare provision for future generations.
The numerous essays include one from Jo Harkness of the International Alliance of Patient Organisations of which EFCCA is a member. That particular contribution to the future is about patient centred care which fits part of the aims and objectives of EFCCA, which is also part of the HFE alliance.

Copies of the book are available via the HealthFirst Europe website at:
www.healthfirsteurope.org or contact the HFE Secretariat on +32-2-6261999 or at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

EFCCA announces the results of its first Pan European IBD Patients Survey

On 18 October during the United European Gastroenterology Week in Copenhagen EFCCA held a press conference to announce the results of its first ever European IBD Patients Survey in which members of the Crohn's and Colitis Patients associations in Denmark, Italy, The Netherlands, Portugal, Spain, Switzerland and the United Kingdom took part. More than 5600 completed surveys were received from patients in the 7 countries taking part in the initial survey.

- The results highlighted that while a majority of patients reported satisfaction with their current treatment medications, most also reported that their symptoms continue to affect their lives whether while at work or at leisure

- Even though a majority of patients rated their quality of live improved after surgery a large number also reported recurrence of symptoms and complications after surgery

- A majority also indicated that they would rather try a new therapy instead of facing surgery

EFCCA Chairman Rod Mitchell comments that he is delighted that so many patients have responded and that they were pleased to be able to share their experiences with other IBD patients across Europe. Patients with Crohn's and Colitis - IBD can be helped so they should talk openly with their Doctors about their symptoms and not "suffer in silence", even if already on a medication there may be alternatives available. The responses will assist EFCCA and the national associations in their future work.

Those who are not already members or in touch with their local Crohn's and Colitis patient group or association should get in touch with them as often they can help too. Being part of the wider IBD family and meeting new friends can all play a positive part( Click here for the contact details of the EFCCA member national associations)

Those patients in countries where there is currently no patient support group or Crohn's and Colitis - IBD patient association may contact the EFCCA Secretariat.

[Click here to download the Final Survey Release]

[Click here to download the Final Pan-EU Survey Fact Sheet]

European Commission has launched “Your Voice in Europe” website

“Your Voice in Europe” is the European Commission’s single access point to a wide variety of consultations, discussions and other tools. These enable you to play an active role in the European policy-making process.

Four sections are proposed to make the voice of the EU citizens heard:

• Consultations, where open consultation procedures and results of consultation procedures are published. Also the place where to post opinions on EU policies and influence their direction.
• Discussions, on-line debates and chats with EU leaders on the EU and its future
• Your experience, offers EU citizens to share problems their experienced in the EU in oder to find solutions.
• Useful links, proposes more website for EU citizens to have their say in the construction of the EU.

Visit the website at : http://europa.eu.int/yourvoice/index.htm

European Commission issues Equality and non-discrimination Annual Report 2005

This report is now available for download on the site ashown at the foot of this note. It is in English, French and German (with all other languages to follow). Published by the anti-discrimination Unit of the European Commission, the report looks at the progress, which has been made over the last year in anti-discrimination legislation and policy both at EU and Member State level.

Part one of the report shows where Member States are in implementing the two anti-discrimination Directives. It also presents a users guide to the Directives looking at the different forms of discrimination covered, where exceptions are allowed and what the Commission can do if a Member States fails to properly implement the laws.

Part two looks at the situation of the Roma - now the largest ethnic minority in the EU.

See: http://europa.eu.int/comm/employment_social/fundamental_rights/public/pubst_en.htm

EFCCA - Summary report of Year 2005 General Assembly and associated events - Birmingham UK 4 - 8 May

Click here to download

EFCCA at the Health First Europe exhibition "Medical Innovation for Life" as a member of the HFE alliance

Health First Europe held an exhibition from 20-23 June in the European Parliament in Brussels. EFCCA as members of the HFE alliance were represented over the three days by Chairman Rod Mitchell and Secretary Micke Lindholm who were also in Brussels for other EFCCA business.

EFCCA awareness raising IBD material was also available at the exhibition was launched by an evening reception on June 20, which was attended by a large number of HFE members, health policy experts and parliamentarians. The reception was addressed by HFE's honorary Chairperson Mel Read who stressed that the patient should always be at the centre of national and EU health and R&D policies. MEP Karl von Wogau who hosted the exhibition within the parliament also spoke at the launch reception, calling for greater co-operation at European level in matters of health and healthcare provision

The exhibition, "Medical Innovation for Life" showcased some impressive innovative medical technology for the diagnosis and treatment of disease and disability, including that used in chronic conditions. It also highlighted the importance of encouraging medical innovation in the European Union and served as a reminder that not all Europeans benefit from equitable access to modern, innovative diagnostic technology and medical treatments. .

An estimated 450 people attended the EU Parliament exhibition during the four days, including around 80 MEPs. Initial feedback indicates that all who visited the exhibition found the information on display to be extremely informative, enabling them to gain a clearer picture of the current challenges facing healthcare systems across the EU. In addition, a number of meetings between HFE members and EU decision makers were held that focused on the Commission's proposal for a new Health strategy for 2007-2013 and the upcoming 7th Framework Research Programme, and how these two programmes can seek to tackle current challenges faced by the healthcare sector. More info is available on the HFE website (www.healthfirsteurope.org)

The International Alliance of Patients' Organizations (IAPO) recently published a Policy Statement and Guidelines for Patient Involvement in Health Policy.

IAPO's Policy Statement on Patient Involvement calls for all involved in healthcare - patients' organizations, consumer organizations, healthcare professionals, healthcare providers, policy-makers and others to make it possible for patients and patients' representatives to play a significant and valued role in health policy decision-making.

IAPO's Guidelines for Patient Involvement comprise a simple checklist for policy-makers, healthcare professionals, health providers, healthcare companies - and all others involved in healthcare - to consider to reassess, develop and improve patient involvement initiatives.

The Policy Statement and Guidelines for Patient Involvement are available on the IAPO website: http://www.patientsorganizations.org/involvement

Across Europe without leaving the car using a revolutionary sanitary system

Travelling with IBD – Crohns or Colitis can be worrying. What happens if you need the loo urgently in the middle of nowhere; or even worse in the middle of a city with no toilet facilities in sight. Even a short journey may cause anxiety. A team from indipod have recently driven from John O'Groats in Scotland to Marina di Leuca at the southern tip of Italy – without getting out of their MPV (The indipod can be fitted and used in the rear of an MPV, 4x4 or large estate car)
With a minimal quantity of clean clothing, some water and the indipod in vehicle small toilet systemthe intrepid travellers James Shippen and Barbara May of “Indipod”, left Scotland and travelled down the highways and byways of England and onwards through the Channel tunnel for Paris. After they journeyed to Dijon and Geneva and then through the Alps at Mont Blanc and southwards to Leuca in the south of Italy. They covered the 4000 kms journey in under a week through not leaving the car and using the inflatable bubble toilet system which provides the user with complete privacy and hygiene control …and we are told that no one can even see you or hear you!
After some 2500 miles (4000 kms) and one change of clothing they reached Leuca in southern Italy . For the first time since a wind swept northern Scotland the indipod team’s feet touched terra firma; their legs were shaky from their incarceration but co-ordination soon returned. Their objective had been achieved. The indipod had performed exactly as it had been designed to do and without it the adventure would have been impossible. Then there was just the drive back! All in the cause of raising public awareness of digestive tract diseases.
… and their journey was frequently featured on radio including Radio Europe and during their journey they were both interviewed and recognised in their self-imposed “prison”.
EFCCA delegates from 19 of the 22 member countries who were in Birmingham in early May for their Annual meeting were able to see the benefits of the indipod at first hand. While the picture on the website shows the vehicle at Leuca, Southern Italy, more information about the revolutionary sanitary system for people on the go can be obtained on their website at: www.indipod.com

Emergency Call Number 112

Those travelling and in need of emergency support may like to be reminded that in addition to any other national emergency call numbers there is also a single European emergency call number 112. This number is available free of charge. More information is available on www.eena.org

ADVANCE NOTICE: With the support of the Falk Foundation, EFCCA - the European Federation of Crohn’s disease & Ulcerative Colitis Associations and NACC - the National Association for Colitis and Crohn’s disease in the UK are jointly organising an interactive Patient Seminar in Birmingham on Saturday 7 May at the International Convention Centre. More details are given below:

CROHN’S DISEASE & ULCERATIVE COLITIS & PATIENT DOCTOR INTERACTION

Venue: International Convention Centre Birmingham UK

Saturday 7 May 2005 between 09. 30am & 3.00pm

Preliminary Programme

09.30 Arrival

09.50 – 10.00 Welcome

10.00 – 10.20 What’s new in Crohn’s disease & Ulcerative Colitis in 2005?

10.20 – 10.50 Why don’t we all get the same disease?

10.50 – 11.30 Why is pain and tiredness part of IBD and what can be done?

What can you do for yourself?

11.30 – 12.00 Coffee break

12.00 What the patient wants?

12.15 What the doctor wants?

12.30 Doctor - patient communication in the clinic

1.00 – 2.15 Buffet Lunch

2.15 – 3.00 Panel Discussion

3.15 End of Seminar

Please note that a team of European Doctor and Patient speakers have agreed to make presentations covering the subjects shown in the preliminary programme and to answer questions. Additionally after the lunch break there will be a Panel Discussion which will include a question and answer session.

See the National Association for Colitis and Crohn’s disease UK website from end March 2005 at www.nacc.org.uk for more information.

Seating is limited so please contact NACC direct should you wish to attend the Seminar as tickets are required. NACC can also be contacted by fax : + 44 (0) 1727 862550

The new European Health Card

As of 1 June 2005 European Citizens who are travelling within the European Economic Area for private and professional reasons will be given a European Health Insurance Card which should simply the procedure when receiving medical assistance during their stay in a Member State. For more information about the new card see the EFCCA Newsletter Nos 20 and 21 which you will find on this website. You should also contact your EU member state national government for up to date details about availability of the new European Health Insurance Card as there will be a phased introduction of the card.

Year 2005 Events Diary - Crohns and Colitis - IBD related events

May 4 - 8 EFCCA General Assembly & Delegates Meeting : Birmingham UK
May 6 - 7 Falk IBD Symposium : International Convention Centre, Birmingham UK
May 7 EFCCA - Falk Foundation : Saturday Morning "Doctor - Patients Seminar" at Birmingham International Convention Centre, UK

May 7 - 10 European Human Genetics Conference - ESHG : Prague, Czech Republic

May 14 - 19 Annual Digestive Disease Week - DDW : McCormack Place, Chicago, IL, USA

June 1 - 4 38th Annual Meeting of the European Society of Paediatric Gastroenterology Hepatology and Nutrition - ESPGHAN : Centro de Congressos, Alfandega, Porto, Portugal

June 20 - 22 13th Gastroenterology and Endotheraphy 23rd European Workshop : Brussels Exhibition Centre, Belgium

Sept 10 - 14 World Congress of Gastroenterology - WCOG : Palais de Congres de Montreal, Montreal, Canada

October 14 - 20 United European Gastroenterology Week - UEGW Copenhagen-Malmoe 2005 : Bella Centre, Copenhagen, Denmark

EFCCA General Assembly - Spain 7 October 2004

We are pleased to report that the Crohn's and Colitis Patient Associations from both Croatia and Cyprus were elected to membership at the EFCCA Year 2004 annual meeting. As of October 2004 a total of 22 member national associations are now part of the EFCCA Europe-wide family

During early September 2004 EFCCA representatives attended a European Patients Forum Workshop in Brussels entitled "Driving Better Health in Europe". Later the EFCCA Chairman and the EFCCA Ex-Com Officer responsible for Member Development were invited to Budweis Czech Republic to a Congress at the South Bohemian University where they met with the EFCCA Medical Patron and two members of the Crocodile CZ Crohns and Colitis Patients Associations' Council.

EFCCA Newsletter Sept 2004 NL 21 is available [Click to download]

EFCCA Year 2005 General Assembly and Member Association Annual Delegates Meeting

The 2005 events will be held in Birmingham UK from 4 - 8 May 2005 more information from the EFCCA Secretariat

Review of EFCCA website and facilities

Later in 2004 the EFCCA website will be rebranded to harmonise with new colours contained in the new style EFCCA publicity leaflets, awareness postcards, bookmarks which are now available. Intranet and Europe-wide Survey capability will be introduced

The new style EFCCA publicity leaflets, awareness postcards, bookmarks:

EFCCA’s twice yearly Newsletter 19 and 20

NL 20 was issued in mid May . It contains EFCCA's Year 2004 Action Programme. Among the other reports you will see a number of interesting items covering such subjects as :The European Panel Appropriateness of Crohn’s Diseases Therapy, Compliance issues in IBD a thought provoking patient perspective, Communicating with Patients and some brief information about Awareness, Smoking and Osteoporosis.

In our May 2004 Newsletter you can also find information about the activities of three of the present 20 EFCCA member national associations, some lay Research News and for those who want to understand more about the European Medicines Evaluation Agency an article about EMEA.

Please note that Newsletter NL 20 and the previous one, NL 19 of October 2003 is being made available on this website [Download Page]

EFCCA at DDW, WCPGHAN and UEGW 2004

Following our attendance at the Digestive Diseases Week in America in mid May and our now regular meeting with the Crohns and Colitis Foundation of America - CCFA from 4 - 7 July we will be at the World Congress of Gastroenterology, Hepatology and Nutrition in France, in view of our increasing interest in the growing number of children and young people being diagnosed with IBD and the special needs of those patients and families.

Representatives from EFCCA will also attend the 2004 United European Gastroenterology Week in the Czech Republic from 26 - 29 September. During our time in Prague we will also take part in a workshop entitled "Consensus - the treatment of Crohn's disease" and of the European Crohn's and Colitis Organisation, who are playing an increasingly important role in European IBD (for info about ECCO see the Links page ).

EFCCA at events in Ireland, Netherlands, Croatia, Hungary and Germany

Since early April EFCCA representatives have taken part in various events. Among those were:

International Osteoporosis Foundation Symposium in Cork arising from the important report Osteoporosis in the European Community, which has implications for some patients with inflammatory bowel disease.

• Crohns and Colitis Patient Association of the Netherlands - CCUVN's 25th Anniversary celebrations for Doctors, Patients and families.
• The Falk IBD Symposium in Dubrovnik and at the same time meetings with the Croatian IBD Patients Association and with representatives from Bosnia Herzegovina and Bulgaria
• Hungarian Crohn's and Colitis Patients Associations - MCCBE Bowels Awareness Day in Budapest and the Hungarian Gastroeneterology Society's Congress in Lake Balaton.
• European Genetics (Patients) Alliance and European Human Genetics Society's annual conference in Munich

EFCCA Chairman Rod Mitchell was invited to speak at the end of May at the Hungarian IBD Patients Bowels Day in Budapest and he was able to meet and talk informally with the members and the Board of MCCBE. He was also invited to make presentations about " The Stigma of Inflammatory Bowel Disease" at the Hungarian Society of Gastroenterology Week in Lake Balaton and additionally during the formal scientific sessions to make a presentation about "Quality of Life - from the patient side".

EFCCA Youth Group and the European Young Peoples Weekend in Rome : 29 July - 1 August 2004

At the June 2003 EFCCA Annual General Assembly in Berlin approval was given to a resolution to create an EFCCA Youth Group within the EFCCA "umbrella". For more information about EFCCA Youth Group go to the EFCCA Projects page.

Following six successful annual young IBD peoples long weekend events hosted by EFCCA member associations in Erlangen, Amsterdam, London, Blankenberg, Stockholm and Berlin we are pleased that the EFCCA Youth Group and the Young People's Annual Events "Loekie" team, led by Marco Greco of AMICI Italy, have announced that their EFCCA member association young representatives 2004 event is being hosted in Rome from 29th July to 1 August by AMICI Federazione Nazionale and AMICI Lazio under the title "Drawing the Leadership of Tomorrow"

For more information please contact the EFCCA Secretariat - see address on website.

Click to go to the download page.