Country
Netherlands
Member since
2013
Contact name
Wiena Bakker, Dr. Hilje Logtenberg
Twitter
https://twitter.com/Leverpatienten

The NLV strives to give people with liver disease support and a voice. We aim to improve their quality of life and help stakeholders to improve the quality of their treatment. To that end we offer information, peer support and conduct lobby activities. We co-operate with doctors, specialized liver nurses, health insurers, scientists and other relevant stakeholders. The NLV has 2000 members.

We represent 20 liver conditions:

  • viral hepatitis
  • auto-immune hepatitis
  • cancers
  • liver disease induced by toxins, incl. alcohol, obesity
  • (rare) genetic disorders


Our services

  • Magazine 4 times per year.
  • Digital newsletter 6 – 8 times per year.
  • Telephone and e-mail service .
  • Website: www.leverpatientenvereniging.nl
  • Several patient meetings during the year.
  • 35 volunteers in working groups for:

 - auto-immune liver conditions,
- benign and malicious liver tumors,
- liver transplant,
- viral hepatitis,
- Wilson’s disease.

 

  • Information & support contacts for several other conditions like Budd-Chiari, youth and liver disease, alcohol related liver disease, porphyria.
  • Volunteer for work and social benefits related support.


Our programs

  • BIBHEP: comprehensive program tackling Hep-B and C awareness, identification, treatment and mortality (in cooperation with LiverDoc, Erasmus MC, health insurers and the Ministry of Health).
  • Scientific collection of patient experience knowledge for Hep-C, benign liver tumors and liver transplant to improve patient care.
  • Employment participation chronically ill patients: a tool to inform stakeholders about can’s and can not’s when someone has a liver disease and to support patients with information about resources and rules.


Target group

  • Dutch citizens with liver disease and their families.

 

Tweets

De NLV is op zoek naar partners van leverpatiënten, die hun verhaal willen vertellen in magazine de NLVisie.… https://t.co/um0ZNE0AZT
Mensen die kinderen hebben weten hoe mooi het is om samen allerlei dingen te doen: helpen met huiswerk, wandelen in… https://t.co/hQh9mo6PK8
Voor de periode na het eerste jaar van de transplantatie hebben we een wegwijzer leefregels samengesteld:… https://t.co/Ke8ijJNAuw
De oorzaak van hepatitis B is besmetting met het hepatitis B-virus. Dit virus is heel besmettelijk. Al voordat u kl… https://t.co/hneAq4LnKU

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