Get involved – how you can help
Patients, carers, family members and healthcare professionals
If you have, are caring for someone who has, or work as a health or social care professional or volunteer to support people with:
- Diamond-Blackfan Anaemia
- Congenital Dyserythropoietic Anaemia
- Congenital Sideroblastic Anaemia
- Red Cell Membrane Disorders
- Red Cell Enzyme Disorders
- Transfusion-Dependent Unexplained Inherited Anaemias
. . . we want to hear from you.
Please think about your experience of diagnosis, treatment, management, care delivery and impact on families and fill in our short survey. It should take you about ten minutes. You can complete the survey online, or we will be happy to send you a paper copy.
Charities and organisations
If your charity or organisation serves people who are affected by one of the rare inherited anaemias listed above (including patients, carers, family members, friends, professionals or volunteers), we hope you will sign up to become a supporting partner of the Rare Inherited Anaemias PSP. For more information about joining the Partnership, please contact us.
Whether you are a partner or not, you can also:
- Pass information to your members or contacts, or promote at any events or conferences you are attending - you can dowload a poster using the link below:
- mention the Rare Inherited Anaemias PSP in your next newsletter or blog;
- Tweet about the Rare Inherited Anaemias PSP.
If you would like more information about getting involved with the Rare Inherited Anaemias PSP, please contact us.