@AplasticAnaemia

The Aplastic Anaemia Trust is the only charity in the UK dedicated to raising funds for research and to supporting everyone affected by aplastic anaemia

 London, England
theaat.org.uk
Joined March 2011
  • Tweets1.4K
  • Following351
  • Followers999
315Media
Please note: we're a small team & we only log into X occasionally. But we are here for you full time during working hours! If you need help or want to ask us about aplastic anaemia, please use any of the contact methods listed here for a fast response: theaat.org.uk/support-line
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The AAT retweeted
LifeArc@lifearc19 Dec 2024
Clinicians at @KingsCollegeNHS are trialling cell therapy as the first-ever treatment for aplastic anaemia (a rare life-threatening blood disorder), with promising initial phase 1 results. 🔗lifearc.org/2024/promising-r… Joint funded by us and @AplasticAnaemia.
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Read it here theaat.org.uk/youthboard-let… @wesstreeting @NHSEngland @NHSDigital
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Do you work with someone affected by aplastic anaemia? Take a look at our 'Supporting your employee' page on our website and download our 'Workplace Pack' for ideas and advice to support your employee or colleague. theaat.org.uk/supporting-you… #aplasticanaemia #supportingyouremployee
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So great to see this being discussed by Scottish government, thank you @StuMcMillanSNP & everyone who has written to their MSP! parliament.scot/chamber-and-… Unfortunately the page about rare conditions doesn't come us when you search NHS Inform for aplastic anaemia. What comes up...

The Scottish Parliament

The Scottish Parliament examines what the Scottish Government is doing, makes new laws on devolved matters and debates the issues of the day.

parliament.scot
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...scroll down and, yup, it's our old friend Iron Deficiency anaemia. *Facepalm*. This common confusion means that people with AA have the severity of the condition underestimated by friends, family, employers, even by medical professionals – like their GP or staff at A&E...
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... which is not just frustrating- it's dangerous if you're there in A&E trying to explain you have basically no immune system, and the staff think you're making a fuss and you're just low on iron. CAN YOU SEE WHY WE'RE ANNOYED? Write to your MP or MSP. theaat.org.uk/write-to-your-…

Write to your MP - template letter

Copy and paste, and then edit the below to write to your MP about adding aplastic anaemia to the NHS website. Your letter will have more impact if you use your own words and personal experience, so...

theaat.org.uk
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This is such a great podcast. Go listen now!
Magical Match Podcast@magicalmatchpod7 Apr 2024
S2. Ep8. Part 2 - Lisa Gosnay’s story is available now. In this episode we hear about her struggles with career progression & subsequent health issues which led to her relapse & stem cell transplant. magicalmatchpod.podbean.com/…
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If you've been fundraising, don't forget to donate the money you've raised via our Super Rare page. Thank you to everyone who has been fundraising for us this February and March. justgiving.com/campaign/supe…
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Were you provided with access to psychological support when you or your loved one was diagnosed? One of the recommendations from our Rare Voices report is that psychological support should be a part of the care plan for every patient. Tag your MP in this post if you agree!
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Docs mystified for months at boy's bruises - then deliver devastating diagnosis mirror.co.uk/news/docs-mysti…
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People with aplastic anaemia receive similar treatment as people with blood cancer. A search for aplastic anaemia on NHS.uk gives results for unrelated, less serious conditions! Let’s get aplastic anaemia added to the NHS website. theaat.org.uk/addaa
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@NHSCitizen Is there anything you can do to support us with this please?
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We have been blown away by the response to our petition calling for the NHS website content team to add aplastic anaemia to the NHS website. -Write to your MP! -Sign our Petition! theaat.org.uk/addaa @NHSuk @nhs_headlines @NHSDigital @NHSEngland #NHS #aplasticanaemia
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@NHSCitizen
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Did you receive a reply like this from your MP? Here's what to write back:
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We believe that adding aplastic anaemia to the NHS website would save the @NHSuk money and time. At present, aplastic anaemia patients are individually requesting explanation letters from their clinical team to explain the condition at work or school.
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To add aplastic anaemia would mean these patients could simply share the information page, saving busy doctors valuable time.
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