Patient associations
Dutch Pancreas Association
The Dutch Pancreas Association (Nederlandse Alvleeskliervereniging, AVKV) is a national patient association, which acts as an advocate for fellow sufferers of pancreatic disorders. Activities within the AVKV are mainly carried out by volunteers, all of whom are experts with experience in one or more areas of pancreatic diseases.
The Anusatresia Association
The Anusatresia Association (Vereniging Anusatresie, VA) represents the interests of patients born with an Ano Rectal Malformation (ARM) to healthcare providers and health insurers. It has 400 members in the Netherlands and Belgium. The VA organises meetings aimed at mutual exchange of experiences (fellow-sufferer contact) and creating solidarity. The association has extensive medical, technical and psychosocial information for those directly affected. Many members are open to contact and advice and cooperate in providing information.
The Dutch Celiac Association
The Dutch Celiac Association (Nederlandse Coeliakie Vereniging, NCV) is an association for people who have to follow a gluten-free diet for medical reasons. NCV is committed to promoting the physical and social well-being of people with celiac disease, Non-Celiac Gluten Sensitivity (NCGS) and dermatitis herpetiformis. In the Netherlands, the NCV is the knowledge center for these diseases. The association also stimulates scientific research.
Celiac disease, or gluten intolerance, is one of the most underdiagnosed diseases in the Netherlands. It is estimated that around 170,000 Dutch people have the disease, but only around 20% know it. About 0.5% to 1% of the western population has the disease.
Inflammatory Bowel Disease Netherlands
Inflammatory Bowel Disease NL (Crohn & Colitis NL, formerly CCUVN) is the patient organisation for everyone with Crohn's disease, ulcerative colitis or short bowel/intestinal failure in the Netherlands. They represent the interests of all 90,000 IBD patients in the Netherlands. They help you with the right information on living with a chronic intestinal disease, facilitate meetings with fellow sufferers, and are contact with healthcare providers and (healthcare) insurers, manufacturers and suppliers of medicines, scientists and government and advocate your interests.
Bowel Cancer Foundation
Bowel Cancer Foundation (Stichting Darmkanker) is the place to go for people who are or have been confronted with bowel cancer. The Foundation assists them at whatever stage of the process they are at. From diagnosis to treatment, from recovery to living with the consequences, and even if no cure is possible. Quality of life is central at all these stages.
The GIST Contact Group (part of Sacromen Patient Platform Foundation)
The mission of this contact group is to promote the quality of life of people with GIST (Gastrointestinal Stromal Tumor. Quality of life means a state of as much physical, mental and social well-being as possible with the disease GIST. The foundation aims to ensure that all GIST patients seek treatment at a clinic specialised for this purpose.
Dutch Haemochromatosis Society
The Dutch Haemochramatosis Society (Hemachromatose Vereniging Nederland, HVN) is a patient association representing the interests of individuals with heriditary haemochromatosis (HH). HH is a common hereditary disease; there are at least 8,000 patients in the Netherlands. If left untreated, the disease can lead to serious damage to various organs. Timely diagnosis is important, well possible and simple. The association organises patient information meetings throughout the Netherlands, publishes the magazine IJzerwijzer, informs through a brochure and a DVD, and maintains a website.
The Hirschsprung's disease association
The Hirschsprung's disease association (Vereniging zikete van Hirschprung) sees it as its task to raise awareness of the condition so that the disease is recognised more quickly in newborns. There is still a lot of ignorance about Hirschsprung's disease among GPs, obstetrician, paediatricians and other medical personnel. Above all, the association is a patient association that represents the interests of its members. Contact with fellow patients play a central role in this. Several contact days are organised each year.
Dutch Liver Patients Association
The Dutch Liver Patients Association (Nederlanse Leverpatiënten Vereniging, NLV) is committed to helping patients with liver disease in a professional manner by making a positive contribution, from a patient perspective, to care in general and the self-management of patients with liver disease in particular.
www.leverpatientenvereniging.nl
Living With Hope
Living With Hope (LWH) is the national pancreatic cancer patient association combining the pancreatic cancer activities of the Pancreas Association, the SPKS and the Lisa Waller Hayes Foundation. Living With Hope represents the interests of pancreatic cancer patients, provides advice and information, and offers access to experts by experience, peers and medics, through helplines and lottery days.
Lynch polyposis Foundation
The Lynch Polyposis Foundation (Stichting Lunch-polyposis) provides information and contact with fellow patients. The foundation contributes to improving detection and treatment of people with a hereditary predisposition for cancer. It also increases knowledge and awareness of Lynch, Polyposis and hereditary colon cancer. The foundation performs as a means of communication between healthcare providers and patients.
NET Group Foundation
NETNEC Cancer Foundation (Stichting NET-groep) is a patient advocacy organisation for people with neuroendocrine tumours and neuroendocrine carcinoma, and their relatives. The NETNEC Cancer Foundation represents the interests of patients and relatives with NET cancer or NEC cancer. They do this by encouraging and supporting cooperation between patients and their relatives with healthcare providers. They also provide information materials. And they promote and support scientific research.
Foundation for Patients with Digestive Canal Cancer
The Foundation for Patients with Digestive Canal Cancer (Sichting voor Patiënten met Kanker aan het Spijsverteringskanaal, SPKS) focuses on people with stomach or oesophageal cancer. They want to ensure that this group of patients receive the best possible care, while maintaining the highest possible quality of life. They help fellow patients and their relatives by organising fellow patient contact, providing up-to-date information and advocacy. They also promote scientific research. They connect people who have experienced the same thing.
Dutch Stoma Association
The Dutch Stoma Association (Nederlandse Stomavereniging) is an association for and by people with a stoma or pouch. It is the place where experiences of people with a stoma are gathered and shared. The Dutch Stoma Association provides good information and advice for people who have or will have a stoma or pouch, advocates for high-quality care and is committed to improving and eliminating social bottlenecks experienced by people with a stoma or pouch.
Irritable Bowel Syndrome Interest Organisation
The Irritable Bowel Syndrome Interest Organisation (Prikkelbare Darm Syndroom Belangenorganisatie, PDSB) is the patient organisation for anyone with IBD symptoms. The goal of the PDSB is to support people with IBD symptoms in living with the disease through fellow patients contact, educating patients, doctors and others, encouraging research into causes and treatment methods, improving treatment and care, and advocacy for patients.
Dutch Transplant Foundation
The demand for donor organs and tissue exceeds the supply. The Dutch Transplant Foundation (Nederlandse Transplantatie Stichting, NTS) is therefore doing everything it can to help people on the waiting list. The foundation is committed to more registrations in the Donor Register, more consent from next of kin, more donation procedures and ultimately more transplants.
www.transplantatiestichting.nl
VOKS
VOKS is the patient association for elderly people and children born with oesophageal varices. VOKS aims to inform, support and represent the interests of patients and parents of patients born with oesophageal occlusion. They achieve this goal by, among other things, providing various leaflets, publishing a newsletter four times a year, organising theme days and member contact days.