We're delighted to join the growing global network of patient groups partnering with Cambridge Rare Disease Network (CamRARE) to bring their ‘This Is Me’ #RarePatientPassport to our community! The tools to communicate your #RareCondition to new people!
Sign up for yours here: forms.gle/ggp9afsaH8p8Ez…

The National Institute for Health and Care Excellence (NICE) turns 25 this year. During this time, it has helped practitioners and commissioners get the best care to people fast, while ensuring value for the taxpayer.

Find out more: indepth.nice.org.uk/NICE-at-25/ind…

#alextlc #nice25

Amazing news, this #DonationDay #AlexTLC has been paid! Thank you to everyone who supports us through easyfundraising - you're incredible! Why not get involved? Watch your online shopping turn into free donations for our cause! Sign up now:

easyfundraising.org.uk/causes/alextlc…

#leukodystrophy

Would you like to see our posts on your home timeline? 🤔
Then make sure to follow us ✅
By following our page it will help to ensure more people find out about Alex TLC 💙
To find out how to do this: help.twitter.com/en/using-x/how…
#alextlc #leukodystrophy #helptocope #helptohope

Join the Rare Caregivers Report Webinar held by RARE Revolution Magazine and Rare Patient Voice
Discussing caring for a loved one living with a rare disease and the findings of a recent Rare Patient Voice survey
To register: us02web.zoom.us/webinar/regist…
#raredisease

First case of Krabbe Disease treated in the United Arab Emirates (UAE)
Baby Fatima was only three months old when she received a bone marrow transplant from her pregnant grandmother
To read the article: thenationalnews.com/news/uae/2024/…
#krabbedisease #leukodystrophy

Enter our 50/50 #CashDraw , and you can be in with a chance of winning a #CashPrize each month!

Just £12 gives you 12 chances to win for the next year!

Our last winner won £61.50 and the prize pot increases with every new entry.

alextlc.org/donate/5050-ca…

#alextlc #charitydraw

Please help us to win £1000 to fund our vital work, with Movement For Good ❤️

movementforgood.com/index.php?cn=1…

The next draw is on Monday 20th May.

#alextlc #helptocope #helptohope #leukodystrophy #movementforgood

Our BACP-registered counsellor provides free counselling sessions for our adult community members 💙
Info: alextlc.org/how-we-support…
Questions? Email [email protected]
Thank you to The National Lottery Community Fund for making this service possible 🙏
#alextlc #helptocope #helptohope #leukodystrophy

New report by Kids reveals that for young people with SEND, becoming an adult can feel like falling off a cliff edge.
Kids is asking the Government to step up and fix the disjointed support system.
Read and share the report 👇 kids.org.uk/news/cliff-edg…

Don't forget to check out Charitable Travel next time you're booking a holiday. They sacrifice commission to enable you to make a donation to us 💝

View their latest offers here: offers.charitable.travel/alex-tlc/

#alextlc #helptocope #helptohope #leukodystrophy #charitabletravel #holiday

Researchers at the Myelin Disorders Program at the Children’s National Hospital in Washington are running a study for those affected by Leukoencephalopathy with calcification and cysts (LCC)
More information and study referral form: alextlc.org/news/lcc-patie…
#LCC #leukodystrophy

Enter our 50/50 #CashDraw , and you can be in with a chance of winning a #CashPrize each month!

Just £12 gives you 12 chances to win for the next year!

Sign up now: alextlc.org/donate/5050-ca…

#alextlc #helptocope #helptohope #charitydraw #win

May is #ALSP Awareness Month.

Sisters' Hope Foundation is a non-profit organisation dedicated to adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) patients around the world.

Find out more: sistershopefoundation.org

#alextlc #leukodystrophy #HDLS

Join our Alex TLC Community Facebook Group💙
Today our 133 members will be discussing 'Your experience using care agencies or care workers to support you or your loved one(s)'
To take part in the discussion: facebook.com/groups/alextlc…
#alextlc #leukodystrophy #helptocope #helptohope

Join our next Connecting Communities call with ALD Connect on Sunday 19th May 15:00 (BST)
Our last meeting went really well and provided a valuable opportunity for the ALD community to come together 💙
To register, please email [email protected]
#ALD #alextlc #ALD Connect

Experienced member/trustee of a board?

Ready to step up into a board chair role?

We are seeking an experienced, passionate and motivated individual to chair our committed board of trustees.

Find out more: alextlc.org/support-us/vol…

#alextlc #trustee #chairoftrustees #volunteer

#ParallelWindsor is a Festival of Inclusivity with Challenge Events for all ages, health conditions & abilities.

racespace.com/gb/parallel-li…

Please let us know if you're planning on fundraising for #AlexTLC , and we'll be with you every step of the way!

#DisabilityInclusion

Join us tomorrow for our online community meeting
A chance to meet others in a similar situation, ask for advice and get support from people who truly understand the challenges you face 💙
To join, email [email protected]
#alextlc #helptocope #helptohope #leukodystrophy

It's #MentalHealthAwarenessWeek

This year's theme is #NoMindLeftBehind - calling for a future where everyone can get quality mental health care when they need it.

If you're struggling, we have a free counselling service for over 18s:

alextlc.org/how-we-support…

#alextlc