17th April 2025
Our community meetup in Leeds
We held a face to face meet up at Leeds City Museum on Tuesday 15th April. We had a lovely time together and it was great to be able to connect in person with some of our community members.
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17th April 2025
We held a face to face meet up at Leeds City Museum on Tuesday 15th April. We had a lovely time together and it was great to be able to connect in person with some of our community members.
11th April 2025
We are thrilled to share that we are partnering with the APBD Research Foundation and the Association for Glycogen Storage Disease-UK for an online meeting on Wednesday 25th June.
26th March 2025
Our next online community meeting is on Thursday 10th April from 11:30 to 13:00 (BST). The meeting is held by Karen Harrison, Director of Support, and Jenna Jones, our Counsellor.
23rd March 2025
Karen Harrison, our Director of Support, will be attending and presenting at the 13th International Society for Neonatal Screening (ISNS) European regional meeting in Luxembourg.
11th March 2025
We are excited to announce that we have a face to face meet up planned in Leeds. It will be taking place on Tuesday 15th April at Leeds City Museum from 10:30 until 14:30.
7th March 2025
Our Research Analyst, Kristina, has had a great day attending The Living Well Symposium in Stoke-on-Trent. The event was co-run by Metabolic Support UK and Beacon for Rare Diseases.
7th March 2025
Our next online community meeting is on Tuesday 18th March 12:00-13:30. The meeting is held by Karen Harrison, our Support Services Manager, and Jenna Jones, our Counsellor.
6th March 2025
ELA Symposium is taking place on Saturday 15th and Sunday 16th March 13:00-18:00 (GMT – UK Time) via Zoom. The symposium is open to the international community of patients affected by leukodystrophies.
5th March 2025
We are excited to share with you the date of our next Community Weekend. The event will be taking place from Friday 19th to Sunday 21st September at Hilton London Wembley. Remember to put the date in your diary!
28th February 2025
Hilary Hodge is offering a free online training the Addison’s Self-Help Group UK on parenting with adrenal insufficiency. The online session is taking place on Thursday 27th March 27 at 7-8 pm (GMT).
26th February 2025
Our February 2025 edition is available. This month we will be announcing our Community Weekend 2025, information about a face to face community meet up in Leeds, ways to support us including Zipslide the Clyde, and many more updates!
11th February 2025
We two online meetings we have coming up this month. An online community meeting for everyone to attend and a meeting for carers of affected adults.