Useful links to other organisations who support medical professionals working in haematology or who provide patient support.
Please note that the British Society for Haematology is not a patient body but a professional membership society staffed by administrators not doctors. Therefore we are unable to assist with individual patient queries.
the American Society of Hematology (ASH) serve both clinicians and scientists around the world who are working to conquer blood diseases. The Society's mission is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems, by promoting research, clinical care, education, training, and advocacy in hematology.
The British Blood Transfusion Society (BBTS) offers training and education programmes including Specialist Certificate qualifications as well as a Post-Grad Cert/Dipl/MSc in Advanced Specialist Blood Transfusion Practice. It also holds the UK's leading transfusion conference.
The objectives of the British Society for Haemostasis and Thrombosis are the advancement of public education and the promotion of all branches of medical science concerned with haemostasis and thrombosis. It is the main Academic Thrombosis & Haemostasis Society in the United Kingdom with over 300 members.
The European Hematology Association serve medical professionals, researchers, and scientists with an active interest in hematology. They are proud to be the largest European-based organization connecting hematologists worldwide to support career development and research, harmonize hematology education, and advocate for hematologists and hematology.
The European Reference Network on Rare Hematological Disorders (ERN-EuroBloodNet), launched by the European Commission in 2017, is a network formed by 66 nationally recognized healthcare providers in 15 Member States with the aim to facilitate the concentration of highly specialized expertise and services for the clinical management of patients affected by oncological and non-oncological rare haematological diseases, enhancing as a result the access to best quality of care to patients affected by rare hematological diseases.
HaemSTAR is a UK-wide network of haematology trainees interested in non-malignant haematology. Since 2017, HaemSTAR has shown itself to be an inclusive, versatile, and productive organisation that has produced high quality research. Furthermore, HaemSTAR's reach into every region of the UK widens access to research and provides training for up-and-coming leaders of the future. To get involved in a HaemSTAR project, please visit their website: www.haemstar.org
The International Society of Geriatric Oncology, founded in 2000, aims to optimise the treatment of cancer in older adults. It does this through education, research and clinical practice.
The International Society of Blood Transfusion (ISBT) is an international network of medical professionals that is used to share knowledge about the practice of blood transfusion. Their website provides opportunities for members to get involved in e-working groups and provides access to webcasts captured at their Regional and International Congresses. It also features around 300 scientific guideline documents from 25 different countries and organisations.
The UK ITP forum, established in 2011, is a working group of health care professionals with a special interest in the care of patients with immune thrombocytopenia (ITP).
The Serious Hazards of Transfusion organisation collects and analyses information on adverse events and reactions in blood transfusion in the UK. They hope to improve long-term outcomes in patient care.
SCTSP aims to increase awareness by developing a comprehensive education and training programme for community groups, carers and health professionals. It promotes support, advice and co-ordination of care to individuals and families where there is a major haemoglobin disorder. The project acts as a specialist resource for other professionals and communities at risk and works closely with the Local/Healthy Authority departments and the voluntary sector to develop a coordinated service.
The Thalassaemia International Federation (TIF) Industry Circle, officially launched in 2012, is a network of pharmaceutical industries that share a common interest in haemoglobin disorders (thalassaemia and sickle cell disease) and in the development of technologies relating to their prevention, treatment and monitoring.
The European Society for Blood and Marrow Transplantation (EBMT) is a non-profit organisation, established in 1974, to give scientists and physicians involved in clinical bone marrow transplantation the opportunity to share experiences and develop co-operative studies.
The International Society on Thrombosis and Haemostasis (ISTH) is a global not-for-profit membership organization advancing the understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders.
This is a collection of professional guidelines aimed predominantly at hospital staff. Useful background information about the history of blood transfusion, the use of blood components and blood-borne diseases may be found on the site. E-learning modules are in development.
The UK Forum on Haemoglobin Disorders is a multi-disciplinary group of health care professionals interested in all aspects of sickle cell disease, thalassaemia and related conditions.
Developed by UK-based haematologists, this site is a comprehensive guide to laboratory haemostasis with comprehensive explanations, web links and exercises in data assessment. This will be a useful resource for the postgraduate as well as the undergraduate student.
The Association of Physicians of GB and Ireland (AoPGBI) is the home of Interdisciplinary Translational Medicine hosting a vibrant community of researchers at all career stages. Founded by William Osler in 1907 to advance medicine “in a manner that promotes friendship amongst Physicians”, the AoPGBI has evolved into the premier learned society representing translational clinical research. It has recently further strengthened its base by opening membership to the wider medical community and by reaching out to early career researchers in the United Kingdom, Ireland and beyond. Their aim is to promote high quality interdisciplinary translational research to improve human health and well being. Their Vision is to 1) Engage the wider scientific and public community to raise the profile of interdisciplinary translational research, 2) Develop the careers of translational researchers and 3) Share ideas and knowledge.
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 of the world's leading cancer centers that is devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.
The National Institute for Health and Care Excellence (NICE) produces evidence-based guidance used by the British National Health Service, and many other countries worldwide, to determine the best pathway of care for patients.
The National Cancer Research Institute was founded in 2001 to aid the collaboration between cancer research funders and form a UK-wide strategic partnership.
A database of systematic reviews and randomised controlled trials (updated monthly) relevant to transfusion medicine.
Focusing on blood cancer, the Anthony Nolan Trust provides information to patients and families about receiving a transplant and life after transplant. It also works closely with clinicians and transplant units to find and match patients to stem cell donors around the world.
Anticoagulation UK's mission can be defined by 3 key objectives: (1) Prevention of blood clots, (2) Providing information and education, (3) Promoting patient choice and independence
The Aplastic Anaemia Trust is the only charity in the UK focused on aplastic anaemia. The charity fund research to improve treatment and work tirelessly, at grassroots level, to support every aplastic anaemia patient and their loved ones. As well as offering free website and print resources, they also operate a phone line and supportive Facebook community.
Blood Cancer UK are the UK’s specialist blood cancer charity. Founded in 1960, they have been working for over 50 years to improve patient care and conduct research into blood cancer.
Children’s Cancer and Leukaemia Group is a leading children’s cancer charity and the UK and Ireland’s professional association for those involved in the treatment and care of children with cancer.
Patient led UK charity whose mission is to support and empower Chronic Lymphocytic Leukaemia (CLL) patients, their families and their carers through education and access to reliable, relevant and current information.
A group of patients, carers, doctors, and scientists who are all interested in patients with rare inherited anaemia.
DBA UK is a registered charity that delivers support to and conducts research for those living with Diamond Blackfan Anaemia. The charity has a telephone support line and holds an annual conference for patients, parents and carers.
DKMS UK are dedicated to the fight against blood cancer and blood disorders. Their mission is to provide a matching donor for every blood cancer patient in need of a blood stem cell donation. To make this happen they raise awareness, recruit and retain potential blood stem cell donors to provide a second chance of life, raise funds to match donor registration costs, and improve blood cancer therapies by their own research.
The Immune Thrombocytopenia Support Association is a UK charity promoting the welfare of those living with ITP. They recruit volunteer in-house medical advisers and offer patient and parental support by providing information, guidance for schools and 'listening ear' contact with volunteers.
Lymphoma Action, a registered UK charity, provides education and training for healthcare professionals and emotional support for patients and those living with Lymphoma. Their patient support offers a diverse range of options including a buddy scheme, support groups, a freephone helpline and a live chat service.
For children, their families and the health professionals supporting them, the charity have a comprehensive collection of support materials on aplastic anaemia and its treatment. From a video that explains the condition to children, to advice for young adults on how to maintain relationships during isolation, MarrowKidz has been developed in partnership with clinicians, nurses and families with lived experience.
The UK Mastocytosis Support Group supports Mast Cell Disease patients so they can better understand their disease.
This organisation helps organise informal local and regional groups to enable patients to meet regularly face to face and support each other.
MPN Voice’s mission is to provide clear and accurate information and emotional support to everyone who has been diagnosed with a myeloproliferative neoplasm (MPN) and their families/friends.
Myeloma UK are a UK charity focusing on the discovery, development and access to new treatments for the condition. They provide support to patients and families through trained information specialists, support groups and up-to-date information regarding clinical trials.
Over The Wall offer free-of-charge and inclusive residential and virtual activity camps for children with serious health challenges, aged 8-17 years, as well as for their siblings and the whole family. They do three different types of camps both residentially and virtually: Health Challenge, Sibling and Family camps. Rated ‘Outstanding’ by Ofsted, Over The Wall Camps provide a fun and safe environment for children and young people, building their confidence and self-esteem whilst exceptional medical care ensures our unique ability to cater for more than 130 different conditions. More information can be found on their website
The Patients Association is an independent patient charity campaigning for improvements in health and social care for patients. Through their helpline they support thousands of people each year with their concerns and queries about the health and social care system.
PAS provides information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends and strives to improve current and future diagnosis and treatment of Pernicious Anaemia.
The Sickle Cell Society believes that individuals with sickle cell disease have the right to quality care. This can only be achieved if funding is made available to educate health carers and other professionals about the condition.
The Thrombotic Thrombocytopenic Purpura (TTP) Network was established in 1998 by a TTP patient after receiving responses to an article she had written and published. It provides information for patients and a place for them to share their experiences.
As a health charity, the haemophilia society work to provide easy access to information and opportunities, influence national policy and practice to make the care and treatment of bleeding disorders consistent, effective and accessible to all and enable the voices of all people with bleeding disorders to be heard.
The UK Thalassaemia Society has been in existence for more than 30 years and has amassed a wealth of experience in Thalassaemia not only in the UK, but through its network and associations with other countries.
UK's only charity focusing on support for patients, carers, doctors and nurses involved in the treatment of Waldenström's Macroglobulinemia (WM)
For over 50 years, the World Federation of Hemophilia (WFH) has provided 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.