NHS England IWMD Registry Pilot
Help the development of the IWMD Registry There is an opportunity to be involved in the pilot testing of the registry for the NHS England Inherited White Matter Disorder Service (IWMD).
Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Help the development of the IWMD Registry There is an opportunity to be involved in the pilot testing of the registry for the NHS England Inherited White Matter Disorder Service (IWMD).
Don’t forget about our Grant Programme 💙 We provide small financial grants for families and individuals affected by leukodystrophy.
Join our Online Community Group We have some exciting news to share with you, we have created our own Facebook Group called ‘Alex TLC Community’.
The National Lottery Community Fund helps to expand our support services The National Lottery Community Fund distributes over £600m per year to communities across the UK. The funds are raised by players of the National Lottery. We are thrilled to announce that we have been awarded £174,290 over 5 years to allow us to recruit a Research Analyst and a Counsellor to further support the leukodystrophy community. During the next 5 years, we hope to increase the number of people we support and want to ensure that everyone engaging with our services: •Feels welcomed, engaged and supported by Alex TLC •Develops positive, lasting, and mutually beneficial relationships with peers •Has someone to turn to •Can develop coping mechanisms and are empowered to live positively with their condition •Is better informed about leukodystrophy and how to manage their or their loved ones’ illness •Has improved emotional wellbeing and mental health
How can we help you? Our Support Services are here to support individuals & families affected by a leukodystrophy. It could be you’ve recently been diagnosed or you need advice about managing your current symptoms. Please do reach out, we are here for everyone 💙
Have you used our website? We are currently reviewing our website and your feedback is essential in making sure we make the changes needed.