International Alliance Meeting in Chester

It was a beautiful sunny Saturday morning when all the international participants of the ITP Convention and the Alliance meeting got together at the racecourse in a beautiful city of Chester. Most of the attendees already knew each other well and the reunion was filled with joy and happiness but there were also new faces to get familiar with which was very exciting, too. Patient group representatives outside England came from the USA, Brazil, India, Italy, the Netherlands, Norway, Denmark, Sweden and Finland.

First we had an interesting lecture about Capacity Building with Patient Empowerment given by Maria Piggin. We got new ideas and tools for the patient groups around the globe. After lunch Dr Paula Bolton-Maggs spoke about the world treatment of ITP. It was interesting to see how ITP treatments after first line therapy varies in different countries. Later on Nancy Potthast educated us about the use of the social media. This is a truly needed aspect when thinking about how to spread the awareness of ITP itself and how to get ITP patients aware and interested in patient group actions. We got a whole bunch of great and useful tips for the social media actions in our patient groups.

In the afternoon we had a very alive and innovative discussion together about our next steps of the international alliance. It came very clear that the continuing communication and sharing small and big ideas among patient groups is essential. By sharing ideas and what the others have done already saves the time and energy for the rest. Not all have to reinvent the wheel again. The other important issue was about sharing the news of the new drugs coming on the market for ITP patients. We found this very important especially for those ITP patients who have ‘tried everything’ with no response.

I personally find the international cooperation among patient groups extremely necessary. It gives us strength to keep going on with our associations around the world and gives us tools to develop our patient group work. Sharing ideas and following the more experienced ones is truly inspiring and supporting. Thank you for this amazing opportunity to be part of this international ITP alliance. And my warmest thanks to ITP Support Association for your hospitality. You always make us feel so warmly welcomed to England.

- By Marjo Lindberg Finland