Latest posts tagged with #RareAware on Bluesky
Many people in our community have to fight for the right support to manage their condition 💙
22% of our community members asked were not referred to appropriate specialists.
https://alextlc.org/equity-for-rare#22%
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
21% of our community members asked have not seen or been referred to a leukodystrophy specialist ❌
A community member talks about how long her loved one had to wait to see a leukodystrophy specialist: https://alextlc.org/equity-for-rare/#poll
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
"The IWMD Service means we can access specialist advice quickly. I know that if I am worried about something I can speak to an expert, whereas before this was almost impossible with local services."
alextlc.org/condition-management/nhs-patient-service-registry/#about
#RareDiseaseDay #RareAware
Many of our community have experienced a long diagnostic odyssey with 25% of our members asked having to wait over 2 years for a diagnosis ⌚
Alan's wife, Jan, had to wait over 3 years for her diagnosis: https://alextlc.org/equity-for-rare/#poll
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
Help to raise awareness of leukodystrophy on Rare Disease Day by downloading and displaying our social media banner.
alextlc.org/wp-content/uploads/2026/...
#AlexTLC #RareDiseaseDay #RareAware #EquityForRare
Tomorrow is #RareDiseaseDay
This year's theme is Equity for Rare. Too often, rare disease patients do not receive the medical care and support they so desperately need and deserve in a timely manner.
https://alextlc.org/equity-for-rare/#karen
#AlexTLC #RareAware #Leukodystrophy
It's just one week to go until #RareDiseaseDay
In this video, Sara, our CEO shares why early diagnosis is vital for all leukodystrophies.
Find out about how you can involved next week:
alextlc.org/campaign/rare-disease-day/
#AlexTLC #RareAware
Charlotte explains that she nearly died because of a lack of communication and disjointed care for her rare condition. She is now using her experience to work with us to support doctors to provide excellent rare aware care. Find out more here
www.bbc.co.uk/iplayer/epis...
#RareDisease #RareAware
📢 Learn more about screening and transplants in our guidelines: bit.ly/TBD_Guidelines
#RareAware #TelomereBiology #RareLiverDisease #Advocacy #Education #TBD #BetterTogether
This is Rare Disease Month. #RareAware Many of the 100 different liver diseases are rare. Such as biliary atresia, which occurs in one in 15,000 babies. It Biliary atresia affects girls more than boys and doesn’t usually happen in the same family....
A #rareliverdisease is a #liver disease that affects a small portion of the population. #RareAware. @GlobalLiver
February is Rare Liver Diseases Month. Use the hashtag #RareAware to spread awareness of rare liver diseases. Learn more about the 100 rare liver diseases by checking out our webinar library. https://liveralliance.org/past-webinars/
February is Rare Liver Diseases Month. Use the hashtag #RareAware to spread awareness of rare liver diseases. Learn more about Primary Biliary Cholangitis (PBC) and the other 100 rare liver diseases by checking out our webinar library. https://livercoalition.org/past-webinars/
