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IICPN Newsletter March 2005
| International Interstitial Cystitis Patient Network Foundation |
The IICPN Foundation is a voluntary non-profit organisation |
Newsletter – March 2005  |
| Dear IC patient support groups, country contacts and friends around the world, |
Pioneering in India The IICPN Foundation is an independent, non-profit voluntary organisation that raises awareness and knowledge of IC & associated disorders worldwide. It also provides practical help for patients wishing to get a national or regional support group off the ground. With these objectives in mind, the IICPN Foundation was very happy to respond to the request of our contact person in India, Dr Nagendra Mishra, for help in raising awareness of IC in India and to assist in the launch of an IC patient movement. The USICON 2005 annual meeting of the Urological Society of India in Ahmedabad in January this year was the perfect opportunity to organise a first ever IC info table in India and to combine it with a meeting of Indian IC patients. It was clear that the western concept of a support group cannot be applied in countries such as India and needs adapting to the local situation and social customs. While it will probably take a while for this to get fully off the ground, the awareness of IC raised among urologists through the IICPN Foundation info table will greatly help the situation for IC patients in India. We are happy to report that the Urological Society of India has plans to organise a national symposium on the painful bladder. The full report of this pioneering work can be read on the website: click here |
EAU congress 2005 Istanbul The annual congress of the European Association of Urology in Istanbul in March 2005 was the 6th consecutive year that there has been an IC information booth at this international congress. During this period, huge changes have been seen in attitude and interest. This year the IICPN Foundation compiled a paper summarising standard diagnostic procedures for distribution on its booth at this conference: “Diagnosis and Evaluation Guidelines 2005”. It can be found on our website: This article will be updated on the website as and when new developments take place. Our leaflet on IC in Turkish proved to be very useful for Turkish urologists while we were in Istanbul. This is also available on our website along with a number of other languages, including Chinese: We were joined on our booth this year by Françoise Watel, President of the French support group Association Française de la Cystite Interstitielle. Françoise took full advantage of this opportunity to make many valuable contacts for her young but enthusiastic support group, to gain experience on running IC info booths and to attend relevant parts of the scientific programme. We hope that the French urologists will do everything possible to support this group throughout France. Details of the French support group are: 82 rue Albert, 75013 Paris, France www.orpha.net/associations/AFCI This year, the EAU Congress Press Pack included a press release on IC. Interstitial cystitis had finally achieved the status of ‘hot item’! Furthermore, a state-of-the-art lecture on PBS/IC was given by Professor J. Nordling. Our full report on the EAU congress with a detailed summary of Professor Nordling’s IC lecture can be found on our website: |
| IICPN Foundation becomes member of IAPO - First Global Patients’ Congress At the beginning of this year, the IICPN Foundation became an associate member of the International Alliance of Patients’ Organizations and in February attended the first ever Global Patients’ Congress held in London. “Trust us – we’re patients!” was the theme of the congress where over 70 patient leaders from a diverse range of therapeutic backgrounds around the world exchanged valuable skills and experiences and worked together developing strategies to bring patients to the centre of healthcare systems. Full report on this meeting: click here The 2nd IAPO Global Patients’ Congress will be held 22-24 February 2006 in Spain. For further information visit: |
| International Council of Nurses While attending the IAPO congress, the IICPN Foundation came into contact with the International Council of Nurses (www.icn.ch). The website of this worldwide organisation also has a section called ‘Patient Talk’ with health information for patients and consumers: (www.patienttalk.info). |
Belgian support group The Belgian IC support group is now rapidly becoming a fact. Belgium is of course a country with two official languages and the support group has therefore decided to start with Flemish and to add French once the group is fully operational. Contact details are: Interstitiële Cystitis Patiëntenvereniging België (ICPB), P. Benoitstraat 49, 1800 Vilvoorde, Belgium tel: +32-(0)2-253 93 44 e-mail: info@icpb.be The IICPN Foundation has in the meantime received a number of further requests to help groups, individual patients or supportive doctors make a start on setting up a national or regional IC patient support group in several other countries. |
European Society for the Study of IC (ESSIC) ESSIC has now launched a website which includes a membership application form for doctors and researchers. Although the main ESSIC website is still under construction, there is one very interesting section on criteria. This is the section of the ESSIC Classification Criteria Project Group with a fascinating ongoing discussion on all aspects of criteria and definition of IC. It also has a wealth of scientific information on each of these aspects. It can be accessed by going first to the ESSIC site: www.essicoffice.org and then clicking on IC criteria. This section of the ESSIC website is highly recommended for all those with an interest in IC. |
| Info for Professionals The IICPN Foundation website has made a start on info on IC for health professionals. We will be gradually expanding this during the coming year. If you have any suggestions for specific information, please let us know. There is a constantly updated list of new scientific publications on IC and related topics on the IICPN Foundation website with links to PubMed abstracts. As you will of course appreciate, full articles from scientific journals cannot be placed on the website or distributed in any way for copyright reasons. |
IC & Associated Disorders - Sjögren’s syndrome The translation of Dr J.P. van de Merwe’s book on Sjögren’s syndrome is (slowly but surely) progressing. We now have 8 chapters on the website in the section IC & Associated Disorders: click here Dr Van de Merwe has also written a new 12-page overview (click here) of Sjögren’s syndrome. This can at present be found on the IICPN Foundation website in the original Dutch version (Het Syndroom van Sjögren) but we hope to have an English translation of this useful text available on the website by the end of April. |
With best wishes, Jane Meijlink |
Chairman This message and any files transmitted with it may contain confidential information and is solely intended for the addressee(s). Any unauthorized disclosure or actions taken in reliance on it are forbidden. If you have received this message in error, please delete it and notify the sender. |
updated
10.02.2006 14:52