Bleeding disorders cause extremely painful internal bleeds. Bleeds into joints also cause permanent damage leading to chronic pain and reduced mobility. The conditions can lead to isolation, loss of educational opportunities, and discrimination at work. Treatment with contaminated products has also lead to hepatitis and HIV infections which add to the stigma. As rare conditions, it is hard for patients to find relevant information, get support from other patients, and to speak out together.

We will strengthen our support to our community through regular phone calls to directly address isolation and quickly identify those in need of targetted support. We will adapt the high-quality information we have already developed with specialist healthcare professionals to make it accessible to those who prefer audiovisual or pictorial information. We will strengthen the voice of patients and families from the managed clinical network to the Infected Blood Inquiry.