Members are invited to join us for our next General Meeting in London on Thursday 28th June 2018. We will have a guest speaker, and will discuss the annual report and accounts as well as providing updates on all of our work.
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November 2017 - Concordia International have given their latest update on the supplies of Hydrocortisone Sodium Phosphate (ex Efcortesol).
A research company are looking to speak to those who have been diagnosed with Acromegaly and Neuroendocrine Tumours, and those who provide care and assistance for those who have been diagnosed with these conditions.
We can refer your child (age 8-17 with a health challenge) for this South Health Challenge Camp at Bryanston School, Dorset.
One of our lovely members, Brenda, is planning a variety of her own fundraising activities this year. Here are the details of her first coffee morning on Saturday 7th April in Watford.
Over the past few years, Isabella's family have managed to raise over £20,000 for The Foundation through multiple activities. Their annual Golf Day is coming up so please read more details here.
Invitation to take part in a Genetic Alliance Survey - if you are a pituitary patient deficient in hormones, and how this affects you on a day to day basis.
A messaage from a 9 year old inspiration!
A very Happy Rare Disease Day to you all! Today hundreds of rare disease patient organisations from countries all over the world will hold awareness raising activities. We will be celebrating by raising awareness on social media and via our website. Our Campaigns Manager, Rosa, is also looking forward to attending Rare Disease UK parliamentary reception in Westminster at 1pm, and we are also delighted to have a feature printed in The Guardian. Read the article to find out more and see the ways you can get involved.
We’d like to share with you a few of our volunteers’ achievements within the last week.