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Patients Voice Archieven - Methylomic

Crohn's & Colitis UK

About

We are the UK’s leading charity for Crohn’s and Colitis: lifelong conditions affecting over 500,000 people in the UK.

People affected by the conditions look to Crohn’s & Colitis UK to help them navigate the complex health issues they face, and to support them as they live full lives. We bring the Crohn’s and Colitis community together and we are here for everyone. We are campaigners, we are experts, we are supporters, helping lift the voices of people with Crohn’s and Colitis and raise awareness of the conditions.

We provide information, lobby those in power, and work tirelessly to reduce the stigma around the conditions and symptoms and end the taboo. We want to improve the lives of the people who come to us for support, and we fund vital research towards the long-term goal of a world free from Crohn’s and Colitis.

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AMICI Italia

About

AMICI Italy, the National Association for Inflammatory Bowel Diseases, brings together adults and children suffering from Ulcerative Colitis and Crohn’s Disease, their families, and all those who share the value of health and the bond of social solidarity. It is estimated that in Italy there are about 250,000 people affected by these diseases and 5 million worldwide.  The Association aims to address the socio-health problems posed by these pathologies and avails itself of the advice and collaboration of a committee of professionals dedicated to medical-scientific aspects.

The Association intends to ensure better integration into the patient’s family and social sphere for a disease that is unknown to public opinion. AMICI Onlus is committed to providing support to patients, through free psychological support projects in various Italian treatment centers.  In addition, AMICI Onlus creates campaigns to break the wall of silence around IBD patients, raising awareness at the same time on less recognized issues.

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Crohn-RCUH Association

About

The non-profit organization Crohn-RCUH Association aims to provide general and regular information on all aspects of IBD to patients living in French-Speaking Belgium.  This association has existed since 1985 and is made up of a few volunteer patients assisted by a medical and scientific committee.

Medical information such as therapeutic updates, how various treatments work, vaccines, and more, are handled by the physicians on our medical and scientific committee to be explained to patients either at conferences or through educational articles in the bi-annual magazine that all our members receive.

To help patients cope with their IBD on a daily basis, a team of volunteer patients manage a hotline from Monday to Saturday, as well as 2 Facebook groups. The association also takes steps towards the political world to alleviate legal and social problems that may arise from IBD (for example, with insurance companies !)

The association also provides support and information by bringing together its members and helping them to better cope with the disease (for example, through the PASSE-TOILETTE card)

United We Stand!

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Crohn & Colitis NL

About

Crohn & Colitis NL is the Dutch patient organization for the 90.000 Dutch patients with Crohn’s Disease or Ulcerative Colitis.

Inform

We help you get the right information about living with chronic bowel disease. You get our quarterly magazine Crohniek packed with stories of experience, articles and the latest developments. We keep you well informed through our website and monthly newsletter, social media and information leaflets. And watch our films where people talk about their daily lives with Crohn’s and colitis.

Meet

Meet other people with Crohn’s disease or ulcerative colitis. There are several ways to do this: online in our Facebook groups, by phone, at meetings near you or in your area. Our volunteers who have chronic bowel disease themselves are there for you!

Represent

We are in contact with healthcare providers and (healthcare) insurers, manufacturers and suppliers of medicines, scientists and government and stand up for your interests. We also cooperate with other patient associations and organizations. All kinds of subjects are discussed, such as the shortage of public toilets, the availability of medication, and so on. Together we make a fist and our staff and volunteers ensure that your voice is heard.

Advise

Thanks to our CC panel, we know how Crohn’s disease and ulcerative colitis affect your quality of life. Valuable information, which we use to advise doctors, nurses and researchers on how to improve the quality of care.

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