Coronavirus (COVID-19)

Any concerns or questions please get in contact

For peer support and information on Health Unlocked Forums please access our Peer Support page

Alex - The Leukodystrophy Charity

Covid Resource & Information

Covid Update October 2022: Autumn Booster and Flu Jab Reminder

Covid Update July 2022: All over-50s to be offered COVID-19 booster and flu jab

Covid Updates April 2022: Booster Guidelines, Testing Information & antiviral drug eligibility change

Covid Updates January 2022: England to return to Plan A

Covid Updates December 2021: Rules Change, Vaccination, Covid Pass & Antibody Treatments for Vulnerable

Covid Update November 2021: Face Masks Mandatory

Who can get a coronavirus (COVID-19) vaccine – update

Info about Vaccines for kids aged 12-18 ( * contact your GP if you haven’t heard by the end of August)

Guidance on protecting people who are clinically extremely vulnerable from COVID-19

Roadmap to recovery


Coronavirus and Inherited Metabolic Disorder Webinar Series

Valuing Vaccines– The Association of the British Pharmaceutical Industry Presentations

ADSHG Coronavirus Vulnerable Adult Advice

Covid-19 Vaccine Communication Handbook

Free Vitamin D for clinically extremely vulnerable people

Shielding advice – Tier 4 Areas

Updated Shielding Guidance – Oct 2020

Back to School

Children’s Activities – Boredom Busters

Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19

£37 million to support children with complex needs

Updated Links

Covid-19 & Paediatric Neurology

Addisons Disease Update : Managing medication & COVID-19

Advice for patients / parents / guardians

Alex - The Leukodystrophy Charity

Looking after your Mental Health


The Covid pandemic has affected how we lives our lives, including accessing services and how we socialise with others. This has taken a huge toll on our mental health and it’s vital that we seek support when need it. It’s important that we recognise the additional challenges that individuals affected by Leukodystrophies and their families face during this already difficult time. The Covid pandemic has impacted how many health care and support services are accessed and has restricted the support many individuals receive from family and friends.

There are organisations there to help support your mental health during this challenging time. Please find information below:


Samaritans 116 123

Saneline 0300 304 7000


Useful links:

Mental Health Matters

Provide a helpline providing emotional support, advice and guidance. Please click link for phone numbers for different geographical areas

Mental Health Foundation

Guidance to help mental health during the coronavirus outbreak

Every Mind Matters

Providing information and advice about how to look after your mental health

Together for Short Lives

Download the Booklet PDF here

Together for Short lives have put together a Self-help booklet for parents with seriously ill children.

Alex - The Leukodystrophy Charity