Search in the HOVON website
1. University medical centres, Haematology department
2. General haematological links
The Nederlandse Vereniging voor Haematologie (Netherlands Association for Haematology) is the national organisation for the approximately 450 doctors and biomedical scientists specialising in blood.
The website of the Stichting ImmunoHematoOncologie Nederland (Immuno-Hemoto-Oncology Foundation Netherlands) is currently not active.
The association of integrated cancer centres provides their information about oncological care on Oncoline.
In addition, there is a regional network organisation IKC (Integraal Kankercentrum) (Integrated Cancer Centre) of the nine integrated cancer centres (IKCs), that support care providers in oncology and palliative care. This site offers information mainly for doctors and nurses.
Under Patiënteninformatie NIV (patient information NIV), there are numerous (virtual) brochures in pdf form that you can transfer direct on screen via the links in the alphabetical list.
The following English-language websites are available for professional users:
EHA (European Hematology Association)
ASH (American Society of Hematology)
ASCO (American Society of Clinical Oncology)
MASCC (Multinational Association of Supportive care in Cancer)
European Leukemia Net
National comprehensive cancer network
3. Stem cell transplantation
Europdonor is the Dutch stem cell donor bank. Europdonor contains the anonymous details of the Dutch stem cell donors, which can be consulted for patients worldwide. The site also tells you how to become a stem cell donor.
On the following sites the information is in English and very limited for patients:
EBMT (European Group for Blood and Marrow Transplantation)
Bone marrow donors worldwide
4. Patient organisations
For people with cancer who need more than purely medical assistance, for example psychosocial support, the Ingeborg Douwes Centrum can offer help in the form of individual and/or group therapy.
This help is provided by experts about whom you can find the necessary information on this website.
The Contactgroep Kahler- en Waldenströmpatiënten (CKP – Contact Group Kahler en Waldenstrom patients ) was established in 1983, and is an association for patients with multiple myeloma (in the Netherlands also known as 'Kahler’s disease) or 'Waldenström’s disease', a disease related to multiple myeloma.
The approximately 150 to 200 people in the Netherlands suffering from Gaucher’s disease have built up a substance in their body because they are unable to break it down. The building up of this substance leads to problems with vary widely from individual to individual. They have come together in the Gaucher Vereniging Nederland (Gaucher Association Netherlands) and this website includes a forum for exchanging experiences with fellow sufferers.
The iron accumulation disease Haemochromatosis is the most common hereditary disease whereby from birth, the body absorbs more iron from food than it actually needs. Until recently, it was assumed that haemochromatosis was a rare disease. Many doctors still believe this, and the Hemochromatose Vereniging Nederland (HVN – Haemochromatosis Association Netherlands) wants to change that situation.
This Lymfklierkankervereniging Nederland (Netherlands Association for Lymphoma) offers help and support to (former) patients with Lymphoma and their family members, for example via a telephone service where there is always someone ready to listen. There is also a youth team, specially for people below the age of 40. They also organise a range of meetings and an annual conference at which senior haematologists give lectures on lymphoma.
A professional agency with a great deal of information, also in the form of information folders, brochures and literature that can be requested, is the Nederlandse Vereniging van hemofilie-patiënten (NVHP – Netherlands Association of haemophilia patients). This is the interest group for the approximately 1,600 Dutch men and women with haemophilia and related hereditary disorders.
The Stichting Langerhans Cel Histiocytose (LCH – Langerhans Cell Histiocytosis Foundation) has set itself the goal of achieving recognition for the seriousness of histiocytary diseases that occur most commonly amongst children. They provide information, promote contacts with fellow sufferers and encourage scientific research. The disease is rare and leads to 'too few' victims to receive sufficient attention from government, medicine and researchers.
All adults in the Netherlands who suffer from some form of leukaemia can contact the website of the Stichting Contactgroep Leukemie (Leukaemia Contact Group Foundation) where much attention is paid to the stories of people who have or who have had leukaemia.
The MPD Stichting (Myeloprolipherative Disorder Foundation) attempts to keep its donors up to date on the most recent developments in the field of diagnosis, medicines and treatments for patients with a myeloprolipherative disorder such as: Essential Thrombocythemia (ET), Polycythaemia Vera (PV) and Myelofibrosis (MF).
For patients and carriers of sickle cell anaemia and thalassaemia, the multiethnic Organisatie Sikkel Cel Anemie Relief Nederland (OSCAR) (Netherlands Organisation for Sickle Cell Anaemia Relief) provides information about carriers, prevention and treatment of the diseases sickle cell anaemia and thalassaemia.
Young people who want to know all about the invisible disease sickle cell can best surf to Ik heb sikkelcel (I have sickle cell). The website includes an interview with a sickle cell nurse and explains the difference between a carrier and a patient.
For people with the hereditary and gender-specific Fabry disease will find in the Fabry Support & Informatie Groep Nederland (Fabry Support & Information Group Netherlands) a well organised interest group. The information they provide about tax deductibility for chronic disorders is useful.
The Stichting Zeldzame Bloedziekten (Foundation for Rare Blood Disorders) aims to assist patients with rare blood diseases in every conceivable field. Information, information days, personal contact or fellow sufferer contact for people with for example Budd Chiari.
The AA & PNH Support Group Foundation focusses on the blood diseases Aplastic Anemia and PNH. The website provides information for patients and their relatives and has the possibility to subscribe for the news letter. The AA & PNH Support Group Foundation works closely together with LUMC and Radboudumc.
5. General medical links
Centrale Commissie Mensgebonden Onderzoek (CCMO) (Central Committee for Human Research)
Informatie over het Zorgboek Leukemie (Information about the Care Book Leukaemia)
CMyLife: Platform for CML patients, health care workers and other relevant parties (Dutch website only)
7. General scientific links
The site of the American National Centre for Biotechnology Information, the NCBI, is established as a national resource and contains a great deal of information enclosed in a series of databases.
The component Pubmed on this site is for example a database of published medical articles.
You can use the site interactively via a range of search options such as subject, author and journals.