White Spot Program
When we started our «White Spot Program» several years ago, there were many European countries without a PH association. We called these countries «white spots» in Europe. We then decided we would help color the European map.
We started by creating an electronic start-up guide. This is a booklet that describes step by step what one should do in order to start a PH association. In this way, an association could be started with minimum manpower. Often one dedicated person would be enough. So our job then was basically limited to find a person in a white spot country and then support this person during the step by step approach to start an association. In addition, we provided financial support, as well, as many of the steps had some cost requirements (e.g. registration of the association, creation of a logo, development of a webpage, etc.)
The number of white spots in Europe is now almost zero. Now we will turn our attention to transcontinental countries – i.e. countries that reside partly in Europe and partly in Asia. Our clear aim is that all Europe will be «colored» in not too long…
Capacity Building Program
As the number of white spots decreased, we realized that some associations required our help to mature and develop. We therefore created what we called the capacity building program for this purpose. We looked at very mature and stable associations within our umbrella associations to see what kind of services they provided for their members. Then we created an extensive list of the given services.
We performed a survey to see what level of services our different associations provided. Our intension was simply to see which associations that required our help and what services we could help provide them with.
In this way, we help our associations to mature and develop by using the best of practice principle. Our help is both knowhow and of financial character.
The Fellowship program provides the national member associations with a paid part time assistant (“fellow”), with a good command of English. For practical reasons, English has been the working language of PHA Europe since it was first set up in 2003. The aim of the Fellowship program is to address the language barriers with those associations where the Board/staff/volunteers do not have knowledge of English. This obviously hinders communications and makes working efficiently together very difficult. The problem has become more evident with PHA Europe’s recent rapid expansion. A pilot project was run in 2013 in 9 countries and the program was renewed in 2014 with 14 countries. The current number of countries benefiting from the Fellowship program is 22.
Educational and training opportunities
The Annual PH European Conference (APHEC) gives member associations interesting opportunities for capacity building as well as for information and education. The annual conference is extremely well attended and consistently features key international PH medical opinion leaders as speakers, who provide the attendees with the latest information on new treatments, treatment strategies, surgery, clinical trials currently being held and new developments in research. Other lectures relate to life style issues such as exercise and nutrition. The APHEC also organizes training sessions on different issues of interest to the member associations, including fundraising, the role of the EU institutions, advocacy & lobbying at national and EU level and patient association management issues.