VSOP

 

The Association of Cooperating Parent and Patient Organisations is a crucial umbrella organization in the Netherlands, specifically for rare and genetic diseases. Their website, vsop.nl, provides valuable resources and information for patients, families, and caregivers impacted by rare diseases.

Pedmed-NL has a strong collaborative relationship with this organization, drawing on their knowledge and expertise to help understand and address a wide range of rare diseases. With access to an extensive network of rare disease organizations and experts, Pedmed-NL is well-positioned to contribute to research, offer guidance, and advocate for policies that support patients and their families. The partnership between Pedmed-NL and the Association of Cooperating Parent and Patient Organisations is an invaluable asset in the quest to improve the lives of people affected by rare diseases.

Networks of expertise:

Spierziekten

Aangeboren Vaatafwijkingen

Immuun Trombocytopenie (ITP)

Neurofibromatose type 1 (NF1)

Amyloïdose

Anorectale malformaties (ARM)

Congenitale hernia diafragmatica (CHD) 

Slokdarmafsluiting

Hirschsprung

Mastocytose

Achondroplasie

FAP

Jong-en-SLE

Marfan

MED-SED

Nefrotisch syndroom

OI

PID

Sikkelcel en thalassemie

XLH