Project Patient Advocates

We received a subsidy of approx. 35,000 Euro from ZonMW, a department of the Ministry of Health, Welfare, and Sport in order to run this project.

The biggest problem that effects patients and their parents is obtaining a correct diagnosis.  This is in fact the case for all rare diseases.  Our idea is to use “Patient Advocates” (PA’s) in countries where there are cases of CMTC and Other Vascular Malformations (OVM).

A PA is a someone who has experienced the same problem, such as a patient or a direct family member, who knows the language and culture of the land, knows which doctors have experience and knowledge with these diseases (for example by being involved in diagnosing), knows the local health facilities, is involved with providing information, knows local social media channels, etc.

If there is no local expertise available, the PA can contact our organization in the Netherlands, as well as our knowledge centers, especially for obtaining a medical diagnosis.

The PA defends the rights of patients and keeps patients, families, and health care workers informed.  Improves the awareness with respect to the quality of life of the patient with a disease.  Knows where adequate care and support are available.

We wish to offer our PA’s training and practical tools.  The PA is the link between patients, families, caregivers, and our organization in The Netherlands.

This initiative benefits all patients, also those in The Netherlands.

Our goal is that patients are able to participate in society in their own manner, with their own capabilities, and that they are able to make decisions themselves in their lives. The PA can work as a link by facilitating contacts between patients, and between patients and the appropriate health care professionals.

We want to have at least 10 PA’s, from all over the world, in a workshop during our world-wide conference in The Netherlands.  The workshop has the goal of training the attendees as well as sharing ideas, knowledge, and experiences.  The topics covered in the workshop will be, for example, mission statement, visions, core values, main goals, strategy, policy plan, activity plan, websites, social media availability and use, legal aspects of privacy, cooperation with medical and psychological specialists, and finally communication with patients, families, and health care workers.

Our PA’s can reach patients (and vice-versa) through social media, local patient organizations, local doctors organizations, and local news providers.  We can, for example, provide the material and information.  We would also like to design training and materials for future PA’s.

Do you want more information or would you consider becoming a patient advocate contact