About us

 

WHO ARE WE?

We are a patient organization called Pacienti IBD z.s. Why IBD? We help, bring together and educate patients with inflammatory bowel diseases = IBD in Czechia (60 000 people), Slovakia (20 000 people) and in diaspora. As a professional patient advocates we work worldwide, consult for companies regarding the patient involvement, patient oriented approach, help with clinical trials awareness, communication between stakeholders. We are published authors involved with medical societies.

CONTACT US for further cooperation: Chairwoman Lucie Lastikova, e-mail:

Do you, your child or someone close to you have Crohn’s disease or ulcerative colitis? We publish various specialist publications and brochures and hold educational seminars, informal meetings and conferences in cooperation with a working group of inflammatory bowel disease doctors in the Czech Republic. We offer free of charge online consultancy in the field of legal, nutrition and gastroenterological issues.

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. Since then, we have been helping patients with Crohn’s disease and Ulcerative colitis to manage a 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, 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 writting and translating Patient Guidelines in IBD treatment.

WHAT DO WE DO?

Seminars – We select topics that you are interested in and doctors who can advise and help. The seminars are held regularly every month, usually on Thursdays at 5.30 pm at our office. In the past, you might have been able to visit us for a lecture focused on the news in the treatment of intestinal bowel inflammation, pregnancy in patients with IBD, or process of disease in pediatric patients. We select topics according to the patient interest.

St. Wenceslas IBD Conference – Since 2009 we have been hosting St. Wenceslas IBD conference always in September. Lectures are presented by doctors from all over the Czech Republic. Part of these is consulting that help patients, for example with legal issues, but also with nutrition or cessation of smoking.

IBD World Day – Note the date of 19th May in the calendars. This day we are reminded of the disease that afflicts more than 5 million people worldwide. Crohn’s disease and Ulcerative colitis suffer more than 45,000 people in the Czech Republic. That’s why we put on a purple color in May, inform the public about inflammatory bowel diseases and we make up snakes from toilet rolls. With the longest, 2..4 km in length, we were even registered in the Czech Book of Records in 2015. Last year, Patient Organizations, supported IBD World Day, from 36 countries on four continents.

Don’t be afraid to travel with IBD! – Summer Photographic Competition Don’t be afraid to travel with IBD is for everyone who, despite its health problems, go for to the adventure. For the fifth year we have been motivating patients not to give up and get to know the beauty of the Czech Republic and other countries or continents. Competitive photos from trips, interesting places or holidays are published on our Facebook profile, where online voting takes place.

 

OUR PROJECTS:

WC compass – Our online map of public bathrooms allows all users of the Internet, computers and mobile devices to find the closest toilet on the basis of their geographic location. The practical experience of patients with chronic bowel diseases inspired us to create an online map. Even in large cities it is not always possible to take care of our basic human needs fast and with dignity. People usually only realize how poor the quality of toilets is and that there is an insufficient amount of them when they urgently need one. Visit our website at www.wckompas.cz and find out where the closest toilet is. You can also download a free mobile app for. The application is for everyone who needs to find a place, moms with children as well as the elderly. By adding a toilet to the list, you will help our patients as well as yourself.

WC card – Do you suffer from an unspecified bowel disease? Have you been diagnosed with irritable bowel syndrome? Are you a patient with an ostomy, a celiac or a patient with impaired bowels after surgery? Then a WC card is designed for you. What can you use it for? When you show people the card, you can get to a public or non-public bathroom faster. In the case of a health emergency, don’t hesitate to use it! The card contains an explanation in Czech and English saying you are a non-infectious patient who urgently needs to visit a toilet. The card does not contain any sensitive personal data. You can use it with our partners who voluntarily committed themselves to accept the card and help patients. The list of all the places where you can use a toilet for free with the card and the rules for using and receiving the card can be found at www.wckarta.cz.

YOU ARE NOT ALONE!