Patient associations give invaluable support to patients and carers in a wide variety of areas, such as providing accessible and understandable information about the disease, practical advice for living with the condition and psycho-social support. They are therefore uniquely placed to advocate patient interests. PHA Europe’s goal is to put in place a strong European PH community consisting of empowered national patient associations, working together to achieve common objectives. PHA Europe’s capacity building activities include support programmes as well as educational and training opportunities.
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 23.
“White Spots” program
Despite many new patient associations having been set up in recent years, there are still some countries in Europe without: we call these “white spots”. Through its “White Spots” program PHA Europe offers start-up funds and support for associations wishing to set up as well as to recently established ones, to help them in their initial activities. This support includes legal and administrative costs for registration, setting up of a website and social media platforms, first brochure, first patient meeting, etc. A number of member associations have benefited from this program in the past and the number of “white spots” is slowly decreasing.
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 themember associations, including fundraising, the role of the EU institutions, advocacy & lobbying at national and EU level and patient association management issues.