Other rare bone marrow failure disorders

DC Action

Support and information for people affected by Dyskeratosis Congenita.

PNH Support

Support and information for people affected by PNH

Fanconi Hope

Support for families affected by Fanconi Anaemia

Stem Cell Transplant and Bone Marrow Registers

In the UK, people can join the stem cell register via the following three organisations. Anthony Nolan and DKMS can also set up patient appeals to encourage people to join.

Anthony Nolan

People aged 16-30 can join the stem cell register through Anthony Nolan. They also run patient appeals to raise awareness and provide support to patients and families in need of stem cell transplants. They have an excellent selection of resources about transplants on their website and a useful helpline.

DKMS

People aged 17-55 can join the stem cell register through DKMS. They also run patient appeals to raise awareness and encourage people to register as potential stem cell donors.

Emotional and mental health support

Samaritans - Tel 116 123

Samaritans provide a 24/7 listening service to anyone who is feeling overwhelmed or experiencing difficulties with their emotional wellbeing.

NHS England Psychological Therapies Services

Individuals in England can self-refer themselves to local psychological support services, such as talking therapies or counselling. This website provides details of support services that are available in your area.

Mind

Mind provides information, advice and support to individuals with mental health conditions, and can provide advice about treatments, self-help and the rights of people with mental health conditions.

Employment and work-related issues

ACAS

ACAS can provide support about workers rights, including the rights which people with health conditions such as aplastic anaemia have, including issues such as flexible working, reasonable adjustments and sick pay.

Financial advice and support

Turn2Us

The Turn2Us website features a tool which can calculate which types of benefits you may be entitled to, and provides details of other grants that you may be able to apply for.

Anthony Nolan Grants

Anthony Nolan can provide one-off grants of up to £250 to people who are have had or are due to receive a stem cell transplant to cover essential expenses, such as travel or parking costs, new clothes, which may be necessary due to changes in weight or body shape, for example.

NHS Help with Health Costs

Individuals on a low income may be entitled to support with a number of different health-related expenses, such as prescription charges, hospital travel and parking costs and dental treatment.

Bereavement

Cruse Bereavement Care

Provides free support, advice and counselling for those affected by bereavement.

AtALoss.org

Signposting to local bereavement and grief support services, and free online support from a grief counsellor.