@CongenitalAnaemia

Thank you @louispeters1 for highlighting at #BSH2024 this important question for sickle cell patients - should we do more neuroimaging in SCD?

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??

Wonderful to see Dr Kat Fordwor presenting the sickle cell patient journey maps at #BSH2024 ! Involving patients in the design = most helpful info available!

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/super…

Help us deliver expert psychological support super-rare.org/get-support/

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!

You can make sure we’re here to provide Emotional wellbeing support when people need it most. super-rare.org

By fundraising you will be providing that support when people need it most. super-rare.org

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-advice…

"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

What do you wish people understood about your Super Rare condition? @fanconihope @PNHSupport @CharitySdsuk @CAnaemiaNetwork @AplasticAnaemia @DC_Action

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

@AplasticAnaemia @DC_Action "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

@AplasticAnaemia 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

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

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

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

Your Super Rare fundraising can help us provide patients with the information they need from world-renowned experts. super-rare.org

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