EFCCA MEMBERS EUROPE

Founded in 1985, the Crohn-RCUH non-profit association (A.S.B.L.) brings together patients suffering from Crohn's disease and ulcerative colitis (UCR).

It is guided by a board of directors working in close collaboration with a medical and scientific committee.

Its aims are to provide patients with general information via a quarterly journal and an annual meeting and to represent their interests to the state authorities. For more information, please visit our Become a member section.

+32 2 354 12 85

mici.be

Българска асоциация болест на Крон и улцерозен колит

The Bulgarian Crohn's Disease and Ulcerative Colitis Association is governed by a Board of Directors (BoD) elected by all members. The Governing Board manages the overall activities of the Association, accepts new members, organizes and monitors the implementation of the decisions of the General Assembly.

The operational management of the association is carried out by the Chairman of the Board, who organizes the immediate implementation of the goals and objectives, coordinates the activities of the Board and represents the association in the country and abroad in its relations with state, municipal, financial and banking institutions, as well as with other public organizations and legal entities.

+359 0887 868 778

babkuk.org/

info@babkuk.org

The Croatian Association for Crohn's Disease and Ulcerative Colitis is a non-governmental and non-profit organization. It was founded in 2000 by a group of young people suffering from inflammatory bowel disease (better known as IBD) with the aim of raising public awareness about Crohn's disease and ulcerative colitis and all the difficulties that people with these diseases have. The goals of the association are to raise the quality of life of patients, promote common humanitarian, health, educational, cultural, social, informational, recreational and other interests of people with Crohn's disease and ulcerative colitis, and people with disabilities due to Crohn's disease and ulcerative colitis. The activities of the association are based on volunteer work.

01/ 37-64-059 / 095/8165-447

hucuk.hr/

mail@hucuk.hr

The objectives we set with the establishment of the Association were the following:

    To provide all kinds of help, support, care and attempt to solve the problems of patients.
    The support and effort to establish and operate patient monitoring centres and to protect those suffering from related diseases.
    To inform and enlighten the public about the problems of persons suffering from these diseases.
    The organisation of seminars, conferences, lectures, debates and any other relevant activity that promotes research, progress and improvement of the care provided to these persons.
    To cooperate with the relevant governmental and community services in Cyprus as well as with relevant services and related institutions abroad.

70008084

cycca.org/

You could hear about us, for the first time, in 2008 when we founded a nonprofit association Patients IBD on the impulse of patients with chronic inflammatory bowel diseases. In the beginning, the Working group of doctors for idiopathic intestinal inflammations at the Czech Gastroenterological Society helped us, under the leadership of Professor Milan Lukas. Since then, we have been helping patients with Crohn’s disease and Ulcerative colitis to manage their daily struggle with the disease.

Since 2011 we have been world-wide. We are members of the European Federation for Crohn’s Disease and Ulcerative Colitis (EFCCA), we establish contacts with organizations all around the world, participate in international projects and gain experience. We belong to the National Council of People with Disabilities of the Czech Republic and the Association of Public Benefit Organizations. We share the offices with the Gluten-free Society and with the Czech ILCO – voluntary association of people with ostomy. Representatives of the association Patients IBD are educated by the project of Academy patient’s organizations. We participate in a council meeting of patient organizations‘ at the Ministry of Health of the Czech Republic, we point out the need to improve conditions for the sick people and try to improve a better availability of modern medicines. We are also dealing with the State Institute for Drug Control and with individual health insurance companies. We believe that early diagnosis and appropriate treatment are the foundation of success; therefore we have been involved in translating Patient Guidelines in IBD treatment.

00420 773 209 320

crohn.cz

lucie@crohn.cz

The Crohn's and Colitis Association provides peer support for people with bowel disease and their loved ones.

The aim of peer support is to support the well-being and quality of life of people with bowel disease and their loved ones, and to enable them to meet and share their experiences. Crohn's and Colitis Association organises peer support meetings in different parts of Finland, and peer support is also available through Facebook groups and a discussion board on the association's website. Peer support is also available from the association's support staff by e-mail and telephone.

Peer support is about interaction. Peer support can be provided by another person who has been through a similar experience. Peer support helps people to cope with the different stages of their illness and gives them a perspective on their illness.

Adaptation coaching courses provide the knowledge, skills and support needed in everyday life to cope with a long-term illness. They can share experiences with others in a similar situation in their lives. Members of the association can also apply for subsidised leave.

075 325 4400

ibd.fi/

info@ibd.fi

The afa is currently the only French organisation, recognised as being of public utility, to be dedicated to chronic inflammatory bowel diseases (IBD), Crohn's disease and haemorrhagic rectocolitis.

The association has several missions:

to cure by supporting fundamental and clinical research programmes, by proposing improvements in the care pathway and by producing knowledge about our diseases or about "living with" them; to inform and support patients and their relatives through a network of trained professionals and volunteers in 22 regions and our internet tools share our experience with other patients and their relatives on the internet or during local meetings; to represent all patients and their relatives, to bring their voices to the attention of political and health decision-makers; to train and inform health professionals on the daily life with the disease; communicate on our diseases, which are still far too little known and taboo; to act as a public health actor in health democracy.

0 811 091 623

afa.asso.fr

The German Crohn's Disease / Ulcerative Colitis Association (DCCV) e.V. is the self-help association for the more than 400,000 people with chronic inflammatory bowel disease (IBD) in Germany. 

"Our most important task is to help those affected to cope with their often difficult life situation" says Ditmar Lümmen, former Federal Chairman of the DCCV. 

In addition to personal counselling and support for affected persons and their relatives, the DCCV arranges contacts to self-help groups, doctors, nursing staff, hospitals and spa clinics. In case of questions or problems with health insurance companies, social security and pension offices, pension insurance providers or employers, the DCCV members are supported by the social law working group. Members also receive legal protection before German social courts. 

The special problems of affected children are taken care of by the DCCV's child/parent initiative: It arranges contacts between parents who are looking for advice or can give advice. One working group deals with questions of nutrition therapy. Other working groups bring together young adults, students and seniors, and people affected by pouch, stoma or PSC. 

The DCCV supports local self-help groups and organises training events for affected persons, relatives, doctors and nursing staff. Through targeted public relations work, the association provides information about the clinical pictures. In cooperation with scientists and through its own research funding, the self-help association strives to intensify research and provides suggestions for new research foci. 

By the way: The DCCV, founded in 1982, is organised by those affected. It is one of the largest patient associations in Germany.

+030 2000 392 11
dccv.de

Association of People with Crohn's Disease and Ulcerative Colitis in Greece
The Association of People with Crohn's Disease and Ulcerative Colitis of Attica was founded in 2006 by a group of patients to meet a need:

To "break" the isolation of the sufferers,
to have a network of sympathetic and non-volunteers who would like to offer their support to any of us who need it,
to have a body that can provide information about these two diseases in plain Greek,
to make known the problems in the daily life of the sufferers, both on a personal level and on a social, work, family, etc. level, and the way they negatively affect our quality of life,
to enable a body to formally represent all patients so that we can finally know our rights and claim what has already been granted to other sufferers of chronic diseases but has not been granted to us
It is clear that in order to achieve our objectives we will have to grow. Although in Greece there is no comprehensive census of Crohn's Disease and Ulcerative Colitis sufferers, epidemiological studies from abroad indicate that about 0.1% of the population are patients. If this is also true in our country, then we are talking about at least 10,000 Greeks who suffer and by deduction about 5,000 in Attica.

The Association of People with Crohn's Disease and Ulcerative Colitis of Attica amended its statutes in 2014 and is formally ready to "embrace" all sufferers in Greece.

+30 6944025788 / +30 6907605369

crohnhellas.gr

info@crohnhellas.gr

MCCBE - Magyarországi Crohn-Colitises Betegek Egyesülete

In March 1994, a few enthusiastic patients and a doctor who cared about their fate decided to form the Crohn's Club. Initially, we met every two months and listened to medical lectures on topics related to the disease. In 1997 we became an association and in 2003 we obtained our public benefit status. The Association's founders - patients with ulcerative colitis and Crohn's disease and their families, legal entities supporting our activities - set the following objectives:

    to help patients learn to live with the disease, which is often very difficult, and to improve their quality of life,
    to represent the interests of patients by giving opinions on draft legislation affecting them,
    support medical research into the disease,
    participate in international organisations of inflammatory bowel disease patients.

A brief summary of the Association's work will be presented below, including the main programmes and activities which, in order to be complete but not in order of importance, serve to achieve the objectives set.

+36 20 5613704

mccbe.hu

mark.baranyai@mccbe.hu

The CCU organization was founded in October 1995 and is an interest organization for individuals with Crohn's (regional enteritis) and Colitis Ulcerosa (ulcerative colitis). Among the organization's goals is support for newly diagnosed individuals, promoting increased general education about the diseases and publishing educational material. The organization is open to everyone, patients, relatives and other interested persons.

Establishment
Digestive specialist Ásgeir Theódorsson is the initiator of the association's establishment. When he was studying in the United States, he learned how important it is for people diagnosed with the disease to have access to such organizations. After discussing these issues with their colleagues, five patients were invited to St. Jósefsspítala in Hafnarfjörður to meet with Ásgeir and two nurses who worked at the hospital. The purpose of the meeting was to discuss the establishment of support organizations. This was in the fall of 1992. After this meeting, preparatory work began. Letters were sent to gastroenterologists and patients with inflammatory diseases of the small intestine and colon, i.e. Crohn's and Colitis Ulcerosa and they are asked to contact the preparation group. A preparatory meeting was then held in Gerðuberg on March 23, 1993. The five-person preparatory group, two relatives and eleven patients attended - out of the 450 people who were then known to have been diagnosed with the diseases. It was not possible to officially establish the organization this time, as had been hoped, but the preparatory group continued its work tirelessly. In September 1995, letters were again sent to digestion specialists, intelligent persons and also to all health centers in the country with an announced founding meeting on October 26. Everyone who received a letter was also called, and this was a great success, with around 60 people attending the founding meeting. At this meeting, the company was finally officially established.

+354 871 3288

ccu.is/

ccu@ccu.is

Founded in 1984, The Irish Society for Colitis & Crohn’s Disease (ISCC) is the patient-to-patient support group for people who are living with Inflammatory Bowel Disease (IBD) in Ireland. We are a member of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). Our medical patron is Professor Colm Ó’Moráin, who is the current president of United European Gastroenterology.

Bruno Lucas, ISCC Chairperson:
I would like to extend a very warm welcome to the new website of The Irish Society for Colitis and Crohn’s Disease, which was relaunched in November 2015. Whether you have been recently diagnosed or indeed if you have been living with this condition for a number of years, we hope that you will find information that will be useful to you in managing your condition.
The board of the ISCC is particularly proud of our achievements and we are continuing to improve our services and our supports for patients and we really hope 2016 (our 32nd year) will be even better.

+353 (01) 872 1416

iscc.ie

info@iscc.ie

The Amici association is formed by people with Ulcerative Colitis or Crohn's Disease and their families.
The association is a Third Sector Organisation, non-profit and regionally based. Since 25 May 2010, AMICI has been a national association with branches in 15 regions. Committees of medical specialists support the association on medical and social issues and coordinate study and research initiatives of a more strictly medical-scientific nature. The association intends to guarantee a more serene inclusion in the family and social environment to chronically ill patients whose condition is unknown to public opinion and social legislation. It is estimated that there are about 150,000 sick people in Italy today. Until the causes of these illnesses are identified, and consequent decisive therapies, their number is destined to increase. All of these people face not insignificant problems in their everyday lives, but the most serious problems actually stem from legislation that does not know enough about serious and acute chronic diseases and is not sufficiently aware of the problems they entail. The association aims to remove the obstacles that actually prevent the full social realisation of these people.

AMICI is an ETS (Entity of the Third Sector) registered with the RUNTS and endowed with legal personality; therefore, pursuant to Articles 83 and 104 of Legislative Decree 117/2017, every donation in its favour, within certain limits, is deductible or deductible from IRPEF tax (for individuals) and is a deductible expense for companies.

+39 (02) 83413346 / +39 388 3983544 / +39 (02) 89070513

amiciitalia.eu

The afa's driving forces: 280 volunteers, 8 permanent staff at headquarters and specialised temporary staff.

The afa is above all a team of :

    280 concerned and involved volunteers who work every day to make the association and IBD better known.
    8 permanent staff members are dedicated to helping them achieve this goal.
    Specialised temporary staff provide personalised support.

All of them are attentive to the needs of patients and their families, while recognising that efforts must continue to nourish the hope of a cure by raising funds for research.

01 42 00 00 40

afa.asso.fr

info-accueil@afa.asso.fr

Crohn's & Colitis NL

We are: Crohn's & Colitis NL: stronger together

• We know what is going on with people with IBD. We are the partner when it comes to patient knowledge and experience in the field of IBD. And are able to mobilize the opinions and experiences of people with IBD at lightning speed.

• We are the platform for people with IBD and their environment: where people can meet, share experiences and learn from each other. In short, we offer a place where people recognize themselves and therefore feel recognized.

• We offer reliable (medical) information and share experiences about how to live with IBD. We assess and test information from the perspective of people with IBD.

+31 348 432920
crohn-colitis.nl
infor@crohn-colitis.nl

The Norwegian Gastrointestinal Association (Mage-tarmforbundet) is a nationwide organisation for patients with a diagnosis related to the digestive system. Our main goal is to look after, promote and maintain the interests of people with digestive disorders and their relatives. Through interest-based political work, peer-to-peer work, counselling and information work, financial support for research, and national and international cooperation, we will work to ensure that everyone with digestive diseases has their quality of life secured both physically, psychologically, socially and financially. 

The Gastrointestinal Association is a patient-driven organisation and has many peers across the country. Through peer-to-peer work, we can offer a range of activities: from evening talks and member meet and greets arranged by our local teams, to our member magazine released quarterly, our active social media, films and forums. Every year we organise youth gatherings, family gatherings, as well as webinars and the IBD day.

(+47) 976 864 271

magetarm.no

post@magetarm.no

The Polish Society for Supporting People with Inflammatory Bowel Disease "J-elita" was established in May 2005, and since 2007 it has the status of a public benefit organization, which means that 1% of income tax can be donated to the J-elite.

Since April 2011, we have been a member of EFCCA - the European Federation of Crohn's and Colitis Ulceros Associations, which brings together Associations from 27 European countries.

We gather sick people, parents of children suffering from ulcerative colitis, Crohn's disease or microscopic enteritis.

We fight for:
• better drug reimbursement
• access to modern treatment
• wider access to nutritional treatment
• faster diagnostics and easier access to specialist doctors
• return of IBD to the list of chronic diseases (which was achieved thanks to joint work in 2009)

+48 695 197 144
j-elita.org.pl
biuro@j-elita.org.pl

The Portuguese Association for Inflammatory Bowel Disease, Ulcerative Colitis and Crohn's Disease (APDI) is a non-profit association of patients for patients, which aims to support and enable the sharing of experiences for sufferers of inflammatory bowel disease (IBD), their families and friends, as well as to improve the knowledge of the general population on this issue.

Our mission is to train and inform about the daily management of a disease that, despite being chronic, should not be lived with pessimism or as a fatality but with quality of life. With the right therapeutic component, a healthy diet, physical exercise and information we believe it is possible to "Be Happy with IBD!"

Our support is provided by phone, email or in person at our headquarters, as well as throughout the country at meetings (awareness actions and annual forum) that we hold with patients with the support of doctors. We also offer our members individual and group psychological support consultations, and provide information in the form of brochures, specifically designed for people living with IBD and those around them (parents, teachers and friends).

APDI was founded by public deed on 10 November 1994. Recognised as a Private Institution of Social Solidarity (IPSS) since 2001 (Publication in the Third Series of the Official Journal no. 103 of 8 May 2001), it is exempt from corporate income tax under the terms of art. 10 of the CIRC.

It is a member of the EFCCA - European Federation of Crohn's and Ulcerative Colitis Associations, of the Plataforma Saúde em Diálogo (Health in Dialogue Platform) and Plataforma Mais Saúde (More Health Platform).

22 208 6350 / 93 208 6350
apdi.org.pt
geral@apdi.org.pt

The Association of People with Inflammatory Bowel Diseases in Romania (ASPIIR) was founded in 2009 and formalized in 2010, with the support of the Romanian Society of Digestive Endoscopy and as a result of the desire of many people diagnosed with IBD (ulcerative colitis, Crohn's disease) to learn more about these diseases, to share their experience, to find answers.

The first meeting, in autumn 2009, in the Fundeni Clinical Institute in Bucharest, brought together a few people with IBD from Bucharest or its surroundings, a few doctors from the 3rd Gastroenterology-Hepatology Section of the Fundeni Institute of Digestive Diseases and Liver Transplantation in Bucharest. Later we were joined by other people: both IBD patients from Covasna, Constanta, Craiova, but also ostomates, their relatives or young volunteers. An important partner and consistent supporter of the association is the Romanian Club for Crohn's Disease and Ulcerative Colitis (RCCC).ASPIIR cooperates with patient associations in Europe, especially with those members of the European Federation of Crohn's and Colitis Associations (EFCCA), to which it is affiliated. It aims to become a key partner for medical teams and the biopharmaceutical industry and, in particular, to be a support for people with IBD in Romania.

We invite you to join the Association of People with Inflammatory Bowel Diseases and look forward to your stories, experiences, questions, suggestions. All these will motivate us in our efforts to improve our activities and achieve the objectives of ASPIIR.

aspiir.ro

info.aspiir@gmail.com

The Slovak Crohn's Club is a civil association of patients with Crohn's disease and ulcerative colitis. Any patient with one of these diseases can become a member. The condition is to send the completed application form and pay the membership fee. Currently, approximately four fifths of the membership are patients with Crohn's disease and one fifth are patients with ulcerative colitis.

The Slovak Crohn's Club is a civic association of patients with Crohn's disease and ulcerative colitis. Both diseases are relatively rare and therefore it is quite difficult for patients to establish contact with each other. Often even those who are treated by the same doctor do not know each other. Since its foundation, the club has been organizing activities that enable mutual meetings where patients can exchange practical experiences from life with this disease. Such an option is especially important for newly diagnosed patients, who are often taken aback by their new life situation. The fact that these are lifelong diseases and also the lack of information about them have a very bad effect on the psyche of young people in particular. Mutual meetings make it possible to gain practical experience (diet, effects of medications, lifestyle...) that a doctor cannot provide even with the best of intentions. We publish information about both diseases, new drugs and treatment procedures that we manage to obtain, as well as news about events in the club, in the club magazine Bulletin.
Every year we organize a reconditioning - rehabilitation stay for our members, aimed at improving the physical and mental condition of the participants. The program includes a course in the basics of yoga and relaxation, tourist trips and professional lectures. Stays are very popular among our members for their informality.
Our club is a member of EFCCA, European clubs with the same focus. The possibility of contact with patients from all over Europe, comparing our and their experiences with treatment and especially with organizing work is very inspiring for us.
The Slovak Crohn's Club is a member of the SHR, a member of the Civilized Diseases Section of the Government Council of the Slovak Republic for the issue of citizens with disabilities, cooperates with the Slovak Association of Gastroenterologists and several pharmaceutical companies that support its activities.

+421 918 216 184
crohnclub.sk
crohnclub@crohnclub.sk

The mission of the Society for Chronic Inflammatory Bowel Disease is to improve the quality of life of people with IBD.

The association has been operating since 2004 and already has more than 1,200 members, who are organised in 11 sections throughout Slovenia. It has the status of a disability organization and the status of a society in the public interest and is a member of the European Association of Patients with Chronic Inflammatory Bowel Disease (EFCCA).

041 665 000

kvcb.si

info@kvcb.si

ACCU Spain is a Confederation created in 1987, declared of PUBLIC UTILITY, non-profit making and working to offer a sensitive, fast and efficient network of associations to help and defend IBD patients.

Our member associations have more than 8,000 members in 34 provincial and/or regional groups, with a vision that aims to create a world in which people's lives are not limited by Crohn's disease and ulcerative colitis. To achieve this, they work with sufferers to expand the support and services they receive, reduce the impact IBD has on them at any given time, and increase patients' quality of life as a result.

Objectives:

To provide moral and physical support to people affected by Inflammatory Bowel Disease (IBD) and their families.

To promote research and dissemination of the medical, therapeutic, welfare, socioeconomic and any other aspects that may arise from IBD.

To promote the principle of self-help, equal opportunities between men and women, the participation of young people in all social spheres, as well as comprehensive care for children and the elderly and the promotion of volunteering.

We divide our work into 5 main areas:

  1.Representation
  2.Research
  3.Training
  4.Dissemination
  5.Social action

We also organise the National Assembly in which medical talks and cultural and recreational activities are held. An event in which we highlight the Honorary Presidency of H.R.H. Felipe VI, in recognition of his support for the Crohn's and Ulcerative Colitis patients' collective.

ACCU Spain is also a founding and active member of the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), of the Spanish Confederation of People with Physical and Organic Disabilities (COCEMFE), of the platform of patient organisations and maintains close collaboration with the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU).

915 426 326

accuesp.com/

accuesp@accuesp.com

The Gastrointestinal Association is for people with diseases, injuries and other functional disorders of the gastrointestinal tract and their relatives. Our core values are knowledge, community and impact.

We are community with others in the same situation. We also engage in community advocacy and impact. We want your everyday life to work as well as possible.

Our starting point is your experience of how life is affected by gastrointestinal diseases. Is this your first contact with us? If so, we think it's funny! Welcome.

08-642 42 00

magotarm.se/

kansliet@magotarm.se

Crohn's Colitis Switzerland (SMCCV) is a patient self-help initiative for patients with inflammatory bowel disease (IBD). It is a non-profit association and through its work seeks to awaken and promote public understanding of the concerns and problems of sufferers.

Crohn Colite Suisse (ASMCC) est une initiative pour l'entraide de patients destinée aux patients atteints de maladies inflammatoires chroniques intestinales (MICI). The activities of our association are not turned towards profit. Through our action, we aim to improve and promote the understanding of the general public about the problems of the people concerned.

0800 79 00 79

crohn-colitis.ch (German) / crohn-colite.ch (French)

welcome@crohn-colitis.ch

The Association of patients with Inflammatory Bowel Disease “Fulfilling Life” was founded in 2018 by IBD patients.

The main goals of the Association are:

1. To achieve implementation of a state program for the treatment of patients with IBD;

2. Protecting the rights and legitimate interests of patients with IBD, оrganization of the patient advocacy process

3. Information and psychological support for patients with IBD

4. Assistance in adaptation and social rehabilitation

+380 95 417 7045

gofulllife.com.ua

watefir@gmail.com