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
- Disability Benefits Consortium
- Specialised Healthcare Alliance
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 46 countries in Europe, including all 27 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.
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 specialist research and communications organisation embedded in the bleeding disorders community. Our mixed-methods approach to research is underpinned by the principle of ‘sharing experience, expanding knowledge’. This approach has helped us to develop an in-depth understanding of the real-life experience of living with haemophilia, Glanzmann’s thrombasthenia, von Willebrand disease, Factor VII deficiency, and more generally (in the Cinderella study) of being a woman with a bleeding disorder. Such an understanding helps to bridge between the advocacy work of patient groups and those who strive to develop treatments and services.
7. Disability Benefits Consortium
8. Specialised Healthcare Alliance
The Specialised Healthcare Alliance is a coalition of patient-related groups and corporate supporters with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. These services cover a wide range of conditions, many of which could affect any one of us at some point in our lives.