to Provide Support to the European
Primary Sclerosing Cholangitis Community
PSC Patients Survey, available in 6 languages!
(just click on the above text)
Primary Sclerosing Cholangitis (PSC) is a rare disease of the bile ducts, involving an inflammation of the bile ducts (due to unknown causes).The scar tissue as a result of this inflammation narrows the bile ducts, as a result of which bile might flow back to the liver. At that point, bile is toxic and can destroy the liver. As yet, there exists no medication that can cure PSC. The primary symptoms of PSC are, among others, (debilitating) fatigue, pruritus (intense itching) and jaundice. As a result, the patient’s quality of life is often low. The estimated median survival rate from diagnosis until liver transplantation or PSC-related death is currently 21 years.
We are a pan-European patient driven organisation, 100% volunteer-based, and we are working together with various national organisations related to PSC, based in, amongst others, Austria, Finland, Germany, Norway and the Netherlands.
Our goals include initiating the various PSC stakeholders to work together closely and form a strong liaison. Education, information resource, support, patient advacacy, research and fundraising for people affected by PSC are a few areas we will cover. In all our activities, we try & incorporate the 'peadiatric element', as we are convinced it is necessary for all stakeholders to realise our children can not be overlooked.
We are strong believers that there should be a lay version of every scientific and medical article and report related to PSC available in open source and in as many European languages as possible. We state 'The lay version is the ultimate completion of the scientific article'. So far, the feedback from the doctors and researchers has been great and PSC Patients Europe has been approached by researchers, doctors and the industry to work on the lay versions and to set criteria to do so.
We feel privileged to be able to share our knowledge and experience with others on a national and international level. This also includes sharing patient expertise to .e.g. other patient organisations and on an EU level.
PSC Patients Europe wants to provide support to all affected by Primary Sclerosing Cholangitis (PSC) , a rare liver disease. By creating 'mass', we believe it is easier to create a good rapport (win-win) with the many other PSC stakeholders, such as researchers, doctors, policy makers etc.. We work closely together with researchers, not only to get the patient perspective embedded in their activities, but also to collaborate to enhance their chances in getting grants and funding,
We encourage our volunteers to make a difference. It is of the utmost importance for us to create a safe & inspiring environment, where PSCers and non-PSCers can use their talents to advance in life and simultaneously make a difference in the lives of many others worldwide. We encourage every patient and every other stakeholder to be a part of the solution!
Currently we receive no funding whatsoever and are paying all our activities out of pocket. We don't have members or charge fees etc., and our matierials, articles are in principal free of charge, as our ethos is that patients and other stakeholders should have free access to information enabling them to better understand this complicated dieases, take better care of themselves/others, have a better quality of life thanks to the information provided and have access to possibly live-saving information.
A donor, who wishes to remain anonymous, has generously donated this website.
Website PSCPE van Marleen M. Kaatee is in licentie gegeven volgens een Creative Commons Naamsvermelding-NietCommercieel-GeenAfgeleideWerken 4.0 Internationaal-licentie.
Gebaseerd op een werk op http://www.pscpatientseurope.org/.
Toestemming met betrekking tot rechten die niet onder deze licentie vallen zijn beschikbaar via http://www.pscpatientseurope.org/.