LPUK delegates had an insightful day at the Cambridgeshire RARE Disease Summit. We met lots of different people, some of whom will be very useful contacts to LPUK, for example Public Health England, Orphanet and Genetic Alliance; these contacts will help us develop LPUK as a charity. We also met some other charities/organisations which will be useful contacts to help support our members e.g. SWAN, MPS; which we can direct our members to, to get additional support. Additionally there was the oppotuniay to raise awareness of dwarfism and LPUK, and spoke to quite a few people with regards to this e.g. scientists, researches, businesses etc. many of whom were unaware of the facts/figures/experiences regarding dwarfism and all were very open to listening and learning.
Overall we felt the day was a success.
We have been invited to attend their event next year, and more details of this will be announced in due course.