Francis - Diagnosis Story
02/05/2018
Author, Francis DiClemente, tells his detailed story of being diagnosed with a Craniopharyngioma.
Found 154 results. Showing Page 4 of 16
Update on supplies of Hydrocortisone Sodium Phosphate (ex Efcortesol)
17/04/2018
November 2017 - Concordia International have given their latest update on the supplies of Hydrocortisone Sodium Phosphate (ex Efcortesol).
Research Study - patients diagnosed with Acromegaly and Neuroendocrine tumours
13/04/2018
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.
Over the Wall South Health Challenge Camp
10/04/2018
We can refer your child (age 8-17 with a health challenge) for this South Health Challenge Camp at Bryanston School, Dorset.
Watford Coffee Morning
05/04/2018
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.
Golf Day for Isabella 2018
05/04/2018
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.
Research Survey - Genetic Alliance
19/03/2018
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.
Russell's story - adrenal crisis experience
13/03/2018
Russell Hawley tells us of his adrenal crisis experience.
Listen to Logan who's climbing Snowdon in support of mum
08/03/2018
A messaage from a 9 year old inspiration!
Rare Disease Day February 28th 2018
28/02/2018
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.
