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  1. Get help
  2. Helpful information resources

Information resources

We create detailed resources for aplastic anaemia patients - to give you expert information on your disease and treatment. 

Information for children and young people

If you're a patient under the age of 25, or a friend or relative or a younger patient, visit the MarrowKidz area of our website to find information for children and young people. 

Order printed booklets and leaflets 

If you'd like any of our information in a printed format, you can order our booklets and leaflets for free using our online shop. 

Information for adult patients

You can browse our information for adult aplastic anaemia patients below. If you can't find what you're looking for, please email Sam at [email protected] and we will do our very best to provide the information you need. We are here for you. 

Discrimination at work - advice for aplastic anaemia patients and carers

Discrimination at work - advice for aplastic anaemia patients and carers

Employment Lawyer Carolyn Miller gives a summary of your rights at work under the discrimination act, how to tell if you're facing discrimination and what to do about it. Read more

Published: 18th December, 2020

Updated: 15th January, 2021

Author: Ellie Dawes

Related topics:
  • Information resources
New practical

New practical "How To..." guides

We have launched 3 brand new How to Guides to offer you advice on maintaining good oral health, managing a nose bleed and increased urinary urgency. Read more

Published: 4th December, 2019

Author: Grazina Berry

Related topics:
  • Information resources
Androgens for the treatment of aplastic anaemia

Androgens for the treatment of aplastic anaemia

A concise leaflet explaining the use of androgens in the treatment of relapsed or refractory aplastic anaemia Read more

Published: 31st January, 2019

Author: Grazina Berry

Related topics:
  • Information resources
Eltrombopag for the treatment of aplastic anaemia

Eltrombopag for the treatment of aplastic anaemia

Eltrombopag is one of the newer treatments for aplastic anaemia Read more

Published: 29th January, 2019

Author: Grazina Berry

Related topics:
  • Information resources
Supportive therapy

Supportive therapy

Blood transfusions are commonly used to treat the symptoms of aplastic anaemia Read more

Published: 25th October, 2018

Updated: 29th January, 2019

Author: Grazina Berry

Related topics:
  • Information resources
Cold season advice

Cold season advice

Information for individuals with aplastic anaemia and their families to help prepare for the cold season Read more

Published: 15th October, 2018

Updated: 4th December, 2020

Author: Grazina Berry

Related topics:
  • Information resources
Benefits

Benefits

A useful guide to the benefits that may be available to aplastic anaemia patients and their families/carers Read more

Published: 2nd August, 2018

Updated: 31st January, 2019

Author: Bryony Partridge

Related topics:
  • Information resources
Clean Diet

Clean Diet

How to avoid getting infections from food when you are neutropenic Read more

Published: 1st August, 2018

Updated: 31st January, 2019

Author: Bryony Partridge

Related topics:
  • Information resources
Holidays and Travel

Holidays and Travel

How to plan a holiday when diagnosed with aplastic anaemia Read more

Published: 25th July, 2018

Updated: 2nd August, 2018

Author: Bryony Partridge

Related topics:
  • Information resources
Information on steroids used as part of ATG treatment

Information on steroids used as part of ATG treatment

Please read our updated fact sheet on the use of steroids as part of anti-thymocyte (ATG) treatment Read more

Published: 16th July, 2018

Updated: 31st January, 2019

Author: Grazina Berry

Related topics:
  • News archive 2018
  • Information resources
Treatment with ciclosporin

Treatment with ciclosporin

Our freshly updated fact sheet on Ciclosporin used as part of Anti-Thymocyte Globulin (ATG) treatment Read more

Published: 3rd July, 2018

Updated: 31st January, 2019

Author: Grazina Berry

Related topics:
  • Information resources
Treatment involving anti-thymocyte globulin (ATG)

Treatment involving anti-thymocyte globulin (ATG)

If you're going into the hospital for ATG treatment, this fact sheet is for you Read more

Published: 3rd July, 2018

Updated: 31st January, 2019

Author: Grazina Berry

Related topics:
  • Information resources
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Latest

  • Super Rare social media

    Super Rare social media

    Social media graphics for you to use to support your Super Rare fundraising.

  • We're hiring! Apply to be our Supporter Experience Assistant

    Do you get a kick out of someone else’s joy as they reach their fundraising target? Are you an excellent communicator online and on the phone? You could be our next Supporter Experience Assistant...

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  • Super Rare 2021 - tea and biscuits

    Super Rare 2021 - tea and biscuits

    Post your pals some Super Rare biscuits and meet up online for a cup of tea and a chat - help us to spread the word about aplastic anaemia and raise funds to support people with this super rare disease.

Most read

  • Jerome shares his aplastic anaemia story so far

    Jerome shares his aplastic anaemia story so far

    Read about Jerome's aplastic anaemia journey so far

  • What is aplastic anaemia?

    What is aplastic anaemia?

    Aplastic means your bone marrow is failing to produce enough of ALL essential blood cells

  • Buffy's story

    Buffy's story

    This blog has been extremely hard for me to write...

  • James' story

    James' story

    James had a tough ride with his aplastic anaemia, but he's lived to tell the tale

  • Grace's adventure

    Grace's adventure

    Little did we know what was coming the next day in May 2017!

  • Tasha's story

    Tasha's story

    Read the inspiring story of Tasha Townsend, our Olympic rower, who kicked aplastic anaemia's butt!

  • Alice's story

    Alice's story

    Thanks to Alice and her family, the British Bone Marrow Register gained huge profile in the UK

  • Diagnosis and treatment

    Diagnosis and treatment information for adult patients. It worth noting that some of the main treatment options may also apply to young patients, however they will be treated by experts specialising in paediatric aplastic anaemia.

  • Coronavirus shielding guidance and support

    Coronavirus shielding guidance and support

    The latest updated guidance on shielding and advice on how to source practical support.

  • Our vision and mission

    Our vision and mission

    We are fuelled by our desire to find a cure for aplastic anaemia and support everyone affected. Click and watch a video about who we are

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Super Rare
Tasha's story

Tasha's story

Read the inspiring story of Tasha Townsend, our Olympic rower, who kicked aplastic anaemia's butt! Read more

Published: 6th April, 2018

Updated: 14th May, 2018

Author: Grazina Berry

Comments: 6

Related topics:
  • Stories
Macy's story

Macy's story

The touching story of Macy who survived aplastic anaemia Read more

Published: 5th June, 2018

Updated: 8th June, 2018

Author: Grazina Berry

Related topics:
  • Stories
  • What MarrowKidz is all about
Rikki shares her rollercoaster experience of aplastic anaemia

Rikki shares her rollercoaster experience of aplastic anaemia

Nothing can quite prepare you for the emotional and physical rollercoaster that is aplastic anaemia. There’s no best-selling book that can teach you how to deal with the turmoil of an illness that wasn’t there yesterday but is very much there today... Read more

Published: 26th April, 2019

Updated: 21st February, 2020

Author: Grazina Berry

Comments: 7

Related topics:
  • Stories
Investing in support for aplastic anaemia patients

Investing in support for aplastic anaemia patients

We're investing in our team, to make sure every aplastic anaemia patient is supported. Read more

Published: 13th August, 2020

Author: Ellie Dawes

Workplace Rehabilitation: Understanding your rights during redundancies with Carolyn Miller

Workplace Rehabilitation: Understanding your rights during redundancies with Carolyn Miller

Join us for our webinar on Monday 18th January, where we'll be exploring the issue of redundancy, how to advocate your needs and understand your rights as someone with aplastic anaemia. Read more

Start: 18th January, 2021 at 5:00pm

End: 18th January, 2021 at 6:00pm

Published: 22nd December, 2020

Author: Ellie Dawes

Location: Online

Related topics:
  • Events
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  • Homepage events feed
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