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IICPN Newsletter June 2004


Dear IC support group leaders, country contacts, patients and friends,

The international IC world is once again very busy this year. Meetings, conferences, discussions and not least of all lobbying by the IC patient movement. Much of this is aimed at working slowly but surely, step by step, towards evidence-based criteria and a new definition of interstitial cystitis / painful bladder syndrome (PBS/IC). The role of the (international) patient movement in all of this is to help ensure that these future criteria and a new definition form a sound basis for the correct diagnosis of patients around the world in the years to come.  
Another step was taken in this direction at the beginning of June when, at the initiative of Professor Jørgen Nordling in Denmark, a new European Society for the Study of IC/PBS (ESSIC) was set up at a meeting held in Copenhagen (ESSIC website). A full report of the meeting written by Dr Joop P van de Merwe can now be read on the IICPN Foundation website. The setting up of ESSIC is a concrete step towards better international cooperation at a scientific level and will hopefully lead to standardisation of diagnosis. This in turn will generate more reliable, comparable study results and better possibilities for multi-centre studies. A European database is also planned.  
In the past two years, there has been a great deal of talking at international levels, it is now time for concrete action, but action based on sound scientific evidence.  
Our contact for patients in India, consultant urologist Dr Nagendra Mishra, now a familiar face in international IC circles, stopped by in the Netherlands for a few days on his way to the meeting in Copenhagen. I took the opportunity to interview him about the situation in India. This can also now be read on the IICPN Foundation website. It was absolutely fascinating to hear from him how different the culture is in India regarding urinary frequency. Indian women never come to him complaining about frequency because frequent urination is considered to be very healthy in India, where stone disease is very common. But since most of these women do not work and spend their time at home, frequency is obviously not the problem that it is for working women!  
It is now essential to raise awareness of IC/Painful Bladder Syndrome in India among both doctors and patients. So we will now take a look to see what we can best do to help Dr Mishra as effectively as possible in this mission.  
We continue to lobby regarding the 'urgency' issue in any future definition of IC. Many IC patients strongly believe that urgency should not be dropped from the definition of IC. Maybe the definition of the term 'urgency' should be changed. It is also believed that proposed definitions of IC along the lines of 'pain in the bladder often associated with frequency', omitting the term 'urgency', may present an inaccurate impression of the symptom complex of IC and consequently the distress suffered by the patients. The patient voice needs to be heard here. Everyone can play a role in this lobbying.  
It was fascinating to discover recently two doctors in Spain, one a urologist (Dr Maria Fernanda Lorenzo Gomez from Salamanca) and the other a rheumatologist (Dr Susana Gomez Castro from Madrid), working together in the field of IC and associated rheumatic and autoimmune diseases. They recently published a very interesting paper in Spanish on 'Relacion Fisiopatologica de la Cistopatia Intersticial con Enfermedades Reumaticas, Autoinmunes e Inflamatorias Cronicas'. We have put them in touch with others working in this field of IC and associated disorders and in IC in Spanish-speaking countries.  
The new IICPN Foundation is gradually taking shape. Setting up an internationally active organisation is very complex, even more complicated than national support groups. There are so many different cross-border factors involved. Particularly bearing in mind that activities take place in different countries and that sponsoring may also come from different countries. This has necessitated weeks and weeks of discussions with the tax office handling non-profit foundations so as to make sure that every eventuality is covered and that no unnecessary tax is paid by the foundation. The IICPN Foundation naturally needs to ensure that maximum benefit is obtained from sponsor money and that these funds are used for the purpose for which they were given according to the conditions specified in the grant award. This entails setting up a structure than will ensure that the most effective and efficient use is made of sponsor money and that all activities are ultimately of maximum benefit to the international patients.  
Details of a project-based organisation are on the website under: Who are we? And will be kept updated. The IICPN Foundation aims to create  a sound basis for a variety of different international projects, aimed at ensuring that any patient representative around the world can participate in international projects. Some of these involve travel, but some can be done from your 'armchair'.  
Anyone who would like to be involved in an international project team, whether regularly or on an occasional basis is welcome to contact the central IICPN Foundation office. These projects may involve an IC info stand at a congress or a "literature translation" project to provide patient information for different countries, or projects focused specifically on developing or third world countries, or countries where little or nothing is known about IC. Any project, large or small, will be considered. We would greatly welcome input by people who have knowledge or experience of work in the field of developing countries and health. We would also be interested in the possibility of linking up with urological or other health organisations working internationally so as to combine forces and save on resources.  
Participants/project leaders/volunteers do not necessarily need to be committee members from support groups. It can be any member or patient representative or retired support group committee members with the necessary knowledge, know-how, commitment, time and willingness to work on an international voluntary project in any capacity.  
If you have suggestions or ideas for projects for 2005, please let us know as soon as possible. Where possible we will try to get central funding so as to avoid large numbers of people applying individually for funding for international activities from pharma companies. This has led to chaotic situations recently and signals from the pharma industry that things were not quite right! Obviously in these rather difficult times, it is not always going to be possible to obtain the sponsoring required, but we can at least try!  
This year projects include/have included an info stand at the EAU congress, helping with the first meeting of Belgian patients, the info stand at the AUA congress, shortly one at the ICI conference in Monaco where an important presentation on IC will be made (report will be placed on the website), an info stand at the ICS in Paris, a project planned for Mexico in November to be organised by Florentina Ferreyra, projects related to the website, projects related to translation of texts into different languages for the website and for distribution as leaflets and constant interaction with urologists and urology organisations worldwide on behalf of the IC patients. In future, manning of the info stands will be kept to a minimum number of people to keep expenses of congress stands down. This does not mean, of course, that individual support group leaders cannot attend congresses separately as delegates under their own sponsorship. Many do this already in order to keep abreast of the latest developments and to pass this information on to their members and colleagues.  
Above all, the foundation wishes to focus attention on the interests of the international patients without any 'political' involvement or conflict. And to be able to work alongside and in harmony with all other groups and organisations in the field of IC/painful bladder syndrome and associated disorders, and where appropriate in coordination with them. We particularly wish to avoid duplication of efforts so as to make sure that every cent available for international voluntary work is spent wisely, efficiently, effectively and economically.

The new website includes information specifically for IC support groups, but also for all patients and all medical professionals. Since the website is rapidly increasing in size, it will shortly be undergoing some redesigning so as to allow the clearest, simplest possible overview of available information.

I hope that the new foundation will be able to provide support for IC groups around the world in a useful way and be able to open up other countries where IC is still not being diagnosed.

If you have anyone else in your organisation who would like to be included on the mailing list for this newsletter, please let me know.

With best wishes

Jane M. Meijlink, BA Hons, MITI, MCIJ
Chairman of the Board International IC Patient Network Foundation
Burgemeester Le Fevre de Montignylaan 73
3055 NA Rotterdam
The Netherlands
tel/fax: +31-10-4613330
email: jane-m@dds.nl

The IICPN Foundation does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. Information provided in IICPN Foundation emails and website is not medical advice. The IICPN Foundation recommends patients to consult their own physician before undergoing any course of treatment or medication.

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