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@CongenitalAnaemia @CAnaemiaNetwork

We are a group of patients, carers, doctors, & scientists who are all interested in patients with #rare inherited #anaemia. #haematology #blood

Joined May 2017
  • Tweets 554
  • Following 364
  • Followers 315
122 Photos and videos
Thank you @louispeters1 for highlighting at #BSH2024 this important question for sickle cell patients - should we do more neuroimaging in SCD?
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Dr Richard Salisbury at #BSH2024 explaining how each sickle cell patient’s exchange transfusion can be better designed to suit their needs. We need more data- could @HaemSTAR_UK get involved to recruit more patients??
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Wonderful to see Dr Kat Fordwor presenting the sickle cell patient journey maps at #BSH2024 ! Involving patients in the design = most helpful info available!
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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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Help us deliver expert psychological support super-rare.org/get-support/
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You can make sure we’re here to provide Emotional wellbeing support when people need it most. super-rare.org/
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By fundraising you will be providing that support when people need it most. super-rare.org/
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One of the biggest worries for people affected by a rare condition can be financial. That's why we're working with an expert benefits advisor to provide advice. super-rare.org/benefit-advic…
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What do you wish people understood about your Super Rare condition? @fanconihope @PNHSupport @CharitySdsuk @CAnaemiaNetwork @AplasticAnaemia @DC_Action
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"I wish they would understand that every day is different that we are not lazy and that we are all trying our best. Just because what I have is not cancer does not mean it is not serious!" - Claire #RareDiseaseDay #RareDiseaseDay2024 #aplasticanaemia
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What do you wish people understood about your Super Rare condition? "I can't predict how I will feel day to day or what certain activities will do to my fatigue levels" Jovita, living with PNH @PNHSupport #RareDiseaseDay #RareDiseaseDay2024
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What do you wish people understood about your Super Rare condition? "That pain is hard to deal with and that it sometime takes time to settle. During an episode people some times are impatient for you to get better...' #RareDiseaseDay #RareDiseaseDay2024
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What do you wish people understood about your Super Rare condition? "I'm still me." - Paula, living with Dyskeratosis Congenita, a rare genetic disorder @DC_Action
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"That it is going to get pretty serious, we will need a lot of support. She just wants to be treated like everyone else, but also needs some allowances made to allow her to do this." Stacy, parent to Kyra who is living with Fanconi Anaemia @fanconihope #RareDiseaseDay
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Are you living with a congenital anaemia or one of the related or similar rare conditions represented by our partner charities? Join in with our Super Rare campaign this month and EARN YOUR TEE! Visit super-rare.org
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It's rare Disease Day tomorrow! Have you read our Rare Voices report? Share it with your doctor, your MP or your friends and family! Who will you send it to? Order a print copy or read it online at super-rare.org/report
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Your Super Rare fundraising can help us provide patients with the information they need from world-renowned experts. super-rare.org/
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When you're diagnosed with a Super Rare condition, you often have to become your own expert. We're here to help. super-rare.org/
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