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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.

We are taking expressions of interest from those who would like to participate in our final workshop. On December 6 we will be running an all day workshop in Oxford to prioritise the top ten unanswered questions. If you are interested in joining please register your interest with the Rare Diseases Research Facilitator, Anju Chalin.

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
  • Register your interest in our final workshop here

If you would like more information about getting involved with the Rare Inherited Anaemias PSP, please contact us.