We collaborate with national bleeding disorder agencies, charitable organisations, Ministries of Health, educational institutions, the UK NHS and enterprise to improve health. We have links to:
- World Federation Hemophilia
- European Haemophilia Consortium
- Haemophilia Scotland
- Department of Health & the NHS
- Clinical reference group
1. World Federation of Hemophilia
The World Federation of Hemophilia (WFH) works with its 140 member organisations to provide global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.
2. European Haemophilia Consortium
The European Haemophilia Consortium (EHC) is an organisation that brings together the national haemophilia patient associations from 44 countries in Europe, including all 28 EU member states.
The EHC’s mission is to improve the quality of life of people with haemophilia in Europe. It works to reduce the burden of the condition on both individuals and society, facilitating consultation, discussion and dissemination of information on important issues related to bleeding disorders. To achieve its aim, the EHC engages with policy makers, the medical profession, people with bleeding disorders and the public with a view to provide expertise and knowledge on how to live with these conditions.
The Haemophilia Society works closely with the EHC to ensure we are supporting and representing members of the Society and our colleagues across Europe. We attend and participate in training events to ensure we have a full understanding of the complex processes often used by governments when assessing access and service provision for haemophilia and other bleeding disorders; we share good practice with other national member organisations (NMOs), and occasionally call on the expertise of the EHC staff and Board to help us understand and resolve complex advocacy issues.
We hosted the 2014 EHC conference in Belfast where we welcomed members from across Europe. The conference was a great success: attendees were able to meet, share, learn and reconnect with friends old and new from across the bleeding disorder community, ensuring we work together for the benefit of our community Europe-wide.
In spring 2014 the Council of Europe published seven new recommendations for haemophilia treatment with coagulation factor concentrates. The recommendations are important because they:
- outline minimum standards
- offer reasonable and achievable goals
- set out a roadmap for countries with deficiencies in haemophilia care or organisation
- can be used as an advocacy tool by patients and doctors with government or other health authorities.
- To optimise the organisation of haemophilia care nationally, it is recommended that a formal body be established in each country to include the relevant clinicians, national haemophilia patient organisation, health ministry, paying authority and (if appropriate) regulatory authorities.
- The minimum factor VIII consumption level in a country should be 3 IU per capita.
- Decisions on whether to adopt a new product should not be based solely on cost.
- Prophylaxis for children with severe haemophilia is already recognised as the optimum therapy. Ongoing prophylaxis for individual adults should also be provided when required based on clinical decision making by the clinician in consultation with the patient.
- Children with inhibitors who have failed, or who are not suitable for, immune tolerance therapy (ITI) should be offered prophylaxis with bypassing agents.
- Single factor concentrates should be used as therapy wherever possible in patients with rare bleeding disorders.
- Orphan drug designation for a factor concentrate should not be used to hinder the development, licensing and marketing of other products for the same condition which have demonstrably different protein modification or enhancement.
3. Haemophilia Scotland
We work closely with Haemophilia Scotland.
4. Department of Health and the NHS
5. Clinical Reference Group
Call for new Clinical Reference Group Patient and Public Member
NHS England is seeking to appoint three patient/public members to each of the 42 Clinical Reference Groups (CRGs) in Specialised Commissioning (126 posts in total).
CRGs, which are grouped within six Programmes of Care bring together groups of clinicians, commissioners, public health experts, patients and carers. They use their specific knowledge and expertise to advise NHS England on the provision of specialised services. CRGs provide advice on the development of service specifications, commissioning policies and opportunities for innovation and service improvement.
These roles are part of a wider group of patient and public representatives embedded in advisory groups within specialised commissioning. The CRG that oversees care for bleeding disorders is known as ‘Blood disorders’.
Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.