Rare Disease Day this year is on 28 February, and as usual there will be many events taking place around the world. Globally joining together for better care.
In the UK ,the home NHS organisations are due to publish their implementation plans for the Rare Disease Strategy, which is a significant event in itself. It will have long lasting consequences, and it is the first example of the devolved heath services joining together in this way since devolution.
For the first time aHUSUK will be supporting Rare Disease UK’s rare disease receptions in all four Parliaments including the South and North of Ireland joining together for a Rare Disease Day event in Belfast .
The “hands up” art project ( see news item 21 November 2013) has reached its 2000 target and the display of the resulting art work will be held on Rare Disease Day.
Work is also in hand within the aHUS patient group community to join together globally to produce something which for the first time will hopefully include as many aHUS families in as many countries as can be reached during February 2014.