The Aplastic Anaemia Trust

The Aplastic Anaemia Trust

At a glance

Causes

  • Health and well being / research and care

Other details

Geographical remit: 
National - Britain

Objectives

The Aplastic Anaemia Trust (AAT) is a small national health charity, the only one in the UK, fighting for better support for a vulnerable and overlooked group of patients, suffering from aplastic anaemia (AA), a rare bone marrow failure disease. We receive no Government funding, relying purely on fundraising to do our work.

Aplastic Anaemia (AA) is a life-threatening illness of the immune system with 80% chance of survival. In AA, the immune system attacks the bone marrow, destroying stem cells and halting the production of all blood cells - red, white and platelets. Currently there are around 5000 families affected by Aplastic Anaemia in the UK, with 100-150 people diagnosed annually in England.

Our VISION is a world free from aplastic anaemia and allied rare bone marrow failures. Our mission is to enable vital research into the causes of aplastic anaemia and other rare bone marrow failures that ultimately leads to finding a cure, and to support everyone affected by them, so they can lead healthy and fulfilling lives.

Our achievements

  • Our key achievement is hugely improved patient survival rates from 30% to 80%, thanks to the £3m funds we’ve raised over time for research, patient-first ethos and collaborative partnerships with the main centres of excellence in the disease.
     
  • In 2018, following the recruitment of a new CEO, we have been implementing an ambitious programme of transformation. This has included building further collaborative relationships with treatment centres nationally, raising awareness of aplastic anaemia and thus growing our patient community by 200 over the last 6 months alone, launching a fresh brand and a new website which has become a dynamic vital resource for new patients, their families and clinicians with easy access to digital resources.
     
  • The number of volunteers engaged with the AAT has increased from 3 to over 40, able to be deployed nationally.
     
  • We have broadened our information resources available to our patients, to include additional new treatments, and made these easily accessible and distributed via our website as well as in hard copy.
     
  • In 2019, as part of our Outreach Programme in collaboration with key treatment centres we have started delivering a pilot programme of Family Information Days, for the first time directly reaching patients and carers with the clinical information and non-clinical support. So far, we have delivered these events in Leeds, Manchester, London and Glasgow. Additional funds are needed to enable us to make a significant step change in our outreach activity across the UK.
     
  • in 2019 we have brought together a collaborative alliance – Together for Healthy Marrow. This strategic partnership of rare disease charities specialising in acquired and inherited rare bone marrow failures will amplify the voice of our patient communities, enable a more proactive and efficient approach to sharing of resources and learning.

Activities

(1) We provide a safe online community via a closed Facebook group that enables 24/7 empathetic peer-to-peer SUPPORT 

(2) We provide people with reliable and up-to-date INFORMATION that answers practical and treatment-related questions 

(3) We provide a HELPLINE that matches patients with individuals who share similar experiences 

(4) We raise funds for RESEARCH so that treatment options are broadened and improved, and a cure - found. 

(5) We raise AWARENESS of the rare disease directly, through national campaigns, such as Rare Disease UK and through our network of volunteers.

No current opportunities

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