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#AlexTLC #RareDiseaseDay #RareAware #EquityForRare

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

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.

#karenre/#karen" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">https://alextlc.org/equity-for-rare/#karen

#AlexTLC #RareAware #Leukodystrophy

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: #pollare/#poll" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">https://alextlc.org/equity-for-rare/#poll

#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy

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

Tim Mahasiswa Farmasi UI di Final Regional AstraZeneca Project iDEA 2025, Ini Inovasi yang Ditawarkan - https://tekno.tempo.co/read/2048799/tim-mahasiswa-farmasi-ui-di-final-regional-astrazeneca-project-idea-2025-ini-inovasi-yang-ditawarkan

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/

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 Primary Biliary Cholangitis (PBC) and the other 100 rare liver diseases by checking out our webinar library. https://livercoalition.org/past-webinars/

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....

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<a href="/hashtag/22%25" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#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: #pollare/#poll" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">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."

#about-registry/#about" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">alextlc.org/condition-management/nhs-patient-service-registry/#about

#RareDiseaseDay #RareAware