Recent campaigns, policy, and awareness work

 

The Foundation takes part in regular policy work, and we campaign on key issues facing pituitary patients to improve care and services. Here are some updates on a few of our most recent activities:

  • We helped ensure Pegvisomant, for uncontrolled Acromegaly, was approved for use on the NHS in Scotland and Wales. Read about this here.
  • We’ve been flying the pituitary flag at a meeting at The Houses of Parliament to raise awareness of rare diseases, alongside taking part in various other consultations. To find out more click here.

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  • Awareness Month October 2017 was the most successful yet as we saw record numbers of participants getting involved in the campaign and the awareness activities we coordinated. Over 3,000 copies of our optician awareness leaflet were distributed, and there was a terrific response on Facebook this year with over 123,800 people reached. Read more here.
  • We will be celebrating Rare Disease Day on the 28th February by raising awareness via social media, publishing patient stories, and attending The Westminster and Welsh Assembly parliamentary receptions organised Rare Disease UK. To find out how you can get involved visit our News page in a couple of weeks where information will be made available. 

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