Links for patients
A lot of information, specifically tailored for patients and their family members with hematological diseases, can be found at the organization: Hematon.
They do not only share information on the different diseases (bone marrow cancer, blood cancer, lymphoma and bone marrow transplantations), but also provide information on the standard of care treatments that are routinely given by the hospitals, outside of the field of trials. They also offer a stage for patients and experts to share their knowledge and experiences and organize meetings for patients.
In our own website we have set up information for all trials, specifically created for patients. You can find this information in our trials section, using the tab: patients. Or follow this link to go directly to that page.
Hematology department of hospitals
Many hematology departments offer information on diseases in the field of hematology and the possible treatments. Please find the websites of the Academic Centers in the Netherlands below.
Specific platforms for patients with hematological diseases
Next to the general platform for patients and their relatives with hematological diseases there are also some organizations that have the focus on a certain disease or group of diseases. Please find them listed below.
The approximately 150 to 200 people in the Netherlands suffering from Gaucher’s disease have come together in the organisation Volwassenen, Kinderen en Stofwisselingsziekten (metabolic diseases). Patients with this disease are unable to break down a certain substance, which as a cause will built up in their body. This leads to a wide variety of problems, changing from individual to individual. This website offers a forum where experiences ca nbe shared.
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.
Langerhans Cell Histiocytosis
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 Netherlands who suffer from some form of leukaemia can contact the website of the Stichting Leukemie (Leukaemia Foundation). Much attention is paid to the stories of people who have leukaemia and the stories of ex-patients.
The MPN Stichting (MPN Foundation) provides information 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).
Sickle cell Anemia
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.
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.
Rare blood disorders
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.
Psychological help for people with cancer
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.