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Links for patients
There are various ways of searching and finding information on the Internet about malignant haematological diseases. It is important to identify what information you really need.
In that way, if you first search for information via the links on this page, it is better not to search for and according to the name of a disease; you will then often end up in the protocols and guidelines intended for doctors and nurses.
Start by searching for patient information, which most hospitals make easily available.
A good example is the link information for patients from the haematology department of the AMC, which just like other university medical centres offer patient information about the treatment of haematological disorders in a clear manner.
1. University medical centres, Haematology department
Erasmus MC Rotterdam
For technical reasons, only the UMC St Radboud Nijmegen has no direct link to information about haematology. On this website, on the left-hand side select the option Departments and then via the letter H go to Haematology.
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 national network organisation IKNL (Integraal Kankercentrum Nederland) (Integrated Cancer Centre), 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 approximately 150 to 200 people in the
Hematon is the organisation for patients with a heamato-oncological disease (Bone marrow cancer, Blood cancer, Lymphoma) and patients who have received a stem cell transplantation. The organisation offers a lot of information regarding the disease and treatment, they offer a stage for patients and experts to share their knowledge and experiences and organise meetings for patients.
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 is a rare disease. Still, many doctors share this opinion. One of the objectives of the Hemochromatose Vereniging Nederland (HVN – Haemochromatosis Association Netherlands) is to change this point of view.
The Nederlandse Vereniging van hemofilie-patiënten (NVHP – Netherlands Association of haemophilia patients) is the interest group for the approximately 1,600 Dutch men and women with haemophilia and related hereditary disorders. NVHP is a professional agency that offers a great deal of information: e.g. brochures and flyers but also professional literature can be ordered at their website.
The Stichting Langerhans Cel Histiocytose (LCH – Langerhans Cell Histiocytosis Foundation) has set itself the goal to achieve 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
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.
Youngsters 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 differences 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.
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)