If you use our website or order booklets from us regularly, you might find this week that some things have moved around! Here's an explanation of what's new - and what's moved.

Why have we changed things?

It's so important to us that our expert information and advice is easy for people to find, and we're always looking at ways to improve. Following some advice from volunteers about search engine optimisation, and feedback from patients and families (particularly our Youth Board), we have had some changes that we've wanted to make for a really long time. 

Thanks to some recent funding from Children in Need, we've finally been able to make some of these improvements, which we're delighted about. Thank you to Children in Need for funding much of the new and updated content for children described below. 

We hope you agree that things are looking better - but we are also constantly improving. There is more to do and we would really love your suggestions and feedback (please email me, Ellie, at [email protected] with your thoughts!)

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What's changed?

New webpages

Nineteen online resources that were previously downloadable PDF versions of our booklets, have been rebuilt as responsive webpages - which means they're easier to read, and digest - especially on a tablet or a mobile. This includes all the pages on our MarrowKidz site.

This also means they'll be read by search engines much better - making them easier to find for people who have been newly diagnosed. 

MarrowKidz - now just for kids!

The MarrowKidz area of our website previously contained resources for children, parents, schools, and young people all the way up to the age of 24.

But a subsite called "Marrowkidz" isn't where a 24 year old would expect to find relationship advice. We're not sure it's helpful for the advice on how to have difficult conversations with your child to appear in the same place as pages that are designed for them to read. And resources like our advice on how to deal with isolation would be just as useful for older adults as younger adults, and we'd like people of all ages to benefit. 

So we've moved anything for teens and young adults into our main website structure. You'll find simple information about AA and diagnosis in Understanding your diagnosis, treatment information in Treatment, advice guides on topics like Isolation and Having AA as a teenager in Life with Aplastic Anaemia, and information sections for parents, for friends, for adult siblings, and for schools all in our Supporting Someone with Aplastic Anaemia section.

This means that our Marrowkidz site now contains responsive webpages that are all suitable for children aged five and up. These resources have been rearranged into categories, so the list is less overwhelming.

New videos!

We know that for poorly children, a long page of text might not be the best format! That's why we've worked with Erica, her big sister Aimee, and her parents Chris and Donna to produce a series of brand new videos. 

Erica had a bone marrow transplant for her aplastic anaemia, and in these videos she shares what that was like - from silly stories (waking up after her biopsy the wrong way round in her bed) to useful advice (why you have to wait a little bit of time for the cooling spray to numb your arm before a needle, and how to play the "yes/no game" on video calls with your friends!) Aimee, Donna and Chris provide the same warm, useful advice in their videos for siblings - and for parents. 

You can watch all Erica and Aimee's videos here (and you'll find them on the relevant information pages too) and Chris and Donna's on our new parents landing page. 

I'm so proud that from now on, a child facing something scary like a bone marrow biopsy or stem cell transplant will be able to watch Erica - looking happy and healthy with a huge grin - telling them what it was like. These videos are a wonderful new resource for us and our community, and I can't thank the family enough for starring in them. 

Another small change I've made to the Marrowkidz website - you might notice our videos there are now embedded using Canva instead of YouTube. This means The AAT can't count the views as easily - but I think it's better, for a children's website area, to not have YouTube adverts, "related" content and links popping up which children can click on and end up on YouTube.

I expect (and would recommend) that parents will browse the Marrowkidz website alongside their children, especially when they're learning about their condition for the first time - so you can discuss any questions or worries together. But now you can be confident that if you're seeing that colourful banner menu at the top of the page, you're only going to see content that's made for children.

(I am also posting this videos on our YouTube channel - so if there are families searching YouTube for aplastic anaemia advice, they'll be able to find them there as well as here.)

Reducing our resources

Since 2020, The Aplastic Anaemia Trust has been publishing factsheet resources in four different age ranges (5-11, 12-16, 17-24, and adult). Each resource is available both online and in print. This isn't just expensive - it's also confusing and unwieldy for our staff team, and for the health professionals and families who order from our library of almost fifty different booklets. 

For treatment factsheets (about ATG, blood transfusions, ciclosporin, etc) - the content in all four booklets is near identical, but written in increasingly complex language. This doesn't feel helpful when you consider that the average reading age of adults in the UK is 9-11 years old, and it is recommended that public information be provided for this reading level. 

So from now on, we will be offering each factsheet in just two versions - one for adults and one for children (both available online and in print). 

For teens and young adults, the adult factsheet will be suitable (of course, younger teens might find the children's guides more accessible, and parents can choose what feels best.) Of course, having aplastic anaemia as a teen or young adult has its own unique challenges, and we'll be keeping our brilliant Having Aplastic Anaemia as a Teenager and Having Aplastic Anaemia as a Young Adult advice guides, which are packed with really useful tips and advice from other young people. 

We're really proud of all our MarrowKidz resources which have been produced in collaboration with young people and families. Where we're reducing the number of factsheets, we're not getting rid of any information that isn't currently duplicated. So if you can't find something you found helpful, get in touch and we'll point you toward the right place!

Widening the impact of our children's AA factsheet

Our gorgeous children's factsheet about aplastic anaemia was perfect for explaining the condition for children who have been diagnosed themselves with aplastic anaemia.

But the way is was written "let's learn how to help you feel better" meant it was not suitable for many other children we support - including children whose parent has been diagnosed.

We've updated the wording of this resource, so it's now suitable for any child affected by AA - whether they've been diagnosed themselves or will be supporting a friend or family member. 

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What's next?

You might notice there are still some information guides on the website which are PDFs (including the guides for parents) - we'll be rebuilding these as webpages as soon as we can.

We'll be retiring old booklets as they run out in print - so at the moment our shop still contains all the booklets in all four age ranges. As the discontinued booklets run out, we'll be updating the shop to make it easier to order the information you're looking for. 

In the meantime, if you find the long lists of resources in the shop a little bewildering - all you need to do is complete our registration form and tell us what you'd like to know and provide your contact details - we'll choose the right factsheets and advice guides and pop them in the post for you.

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I hope you enjoy the refreshed website and gorgeous new videos. go get in touch with me if you have comments or suggestions - you can email me at [email protected].

Ellie