‘In 2018 the theme was Research. Research is key. It brings hope to the millions of people living with rare diseases across the world and their families’. We are celebrating Rare Disease Day. Working together with Rebecca Stewart from Rare Revolution Magazine we have managed to get some great articles, including our own, in theRead More
It’s all a bit of a blur. Great night at the Alfie’s Trust ceilidh at Culter Village Hall. Music provided by the brilliant Ragin’ Ceilidh Band, and fab organisation by Stewart Gardiner. Thanks to everyone that came and supported the event. Lots of dancing, drinking, eating and a fantastic amount of money raised. A grand total ofRead More
Come along for a night of fun all in aid of Alfie’s Trust. On the 25th of November at the Peterculter Village Hall, the Ragin’ Ceilidh Band will have you up on your feet dancing the night away. When you’re not dancing there will be time to chat, drink and eat. There is alsoRead More
Interested in ‘Rare’? Then subscribe to this fantastic magazine ‘Rare Revolution’. A great educational and inspirational read for anyone involved in the rare disease community. Please take a moment to check it out. ‘Rare Science’ Alfie’s Trust is excited to be featured in the ‘Rare Science’ section (page 58-61) of this issue. Along with ourRead More
Come and join us on the 2nd of September for our Annual Golf Event on the 9 hole course at the Paul Lawrie Golf Centre in Aberdeen. You will need four players, children are welcome, to take part in our Texas Scramble. T-off times available throughout the morning. Contact us to secure your place.
Alfie’s Trust, as part of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe, is pleased to be part of The Rudy Study. This is a UK based study with an interest in understanding more about all aspects of rare diseases of the bones, joints and/or blood vessels. The study is open to patients with Gorham’sRead More
Team Alfie was out in force at RunBalmoral again this year. It was a busy weekend with most races having a member of team Alfie taking part. Thank you to our runners and to everybody that supported them. Sponsorship is now in and our total for Runbalmoral 2017 is £3,600.
Alfie’s Trust and its worldwide partners, LGDA-Europe and LGDA-US, are pleased to announce the establishment of an official Worldwide Awareness Day of May 26. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. The campaign’s purpose is to raise awarenessRead More
After attending the British Association of Dermatologists Conference in Birmingham last July, we were contacted by the editor of The Journal Of The British Dermatological Nursing Group to ask if we would like to submit an article in the March edition of their magazine. This was a fantastic opportunity to share our story in theRead More
It was great to be asked to be part of the Rare Disease Day Event in Aberdeen today. I was asked to say something about my experience of having a child with a rare disease. This is my experience from a parent’s perspective.