The first part of the day was a session on establishing what EuroHSP's values and mission were about, identifying the various challenges facing either people with HSP or the national support groups. This session was led by Kathy Redmond, who has undertaken this type of activities with other groups before.
In the room were representatives of most of the EuroHSP members, and a few others. In some cases the group was represented by one person (like me for the UK) and in other cases there were several people representing. The official language of the day was "bad English", which is useful as that is my native language!
Four main thrusts for EuroHSP were identified and these were:
- Working together on EU projects
- Increasing the power of the HSP patient voice
- Facilitate the exchange of experience and information
- Help members be more effective
Everyone in the room was really friendly, and the discussions were very useful. I found it interesting that most of the groups identified the same challenges for living with HSP, however each group has a different focus on where they saw the priorities for EuroHSP. It was a really interesting day.
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