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.<\/p>\n
The biggest problem that effects patients and their parents is obtaining a correct diagnosis.\u00a0 This is in fact the case for all rare diseases.\u00a0 Our idea is to use \u201cPatient Advocates\u201d (PA\u2019s) in countries where there are cases of CMTC and Other Vascular Malformations (OVM).<\/p>\n
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.<\/p>\n
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.<\/p>\n
The PA defends the rights of patients and keeps patients, families, and health care workers informed.\u00a0 Improves the awareness with respect to the quality of life of the patient with a disease.\u00a0 Knows where adequate care and support are available.<\/p>\n
We wish to offer our PA\u2019s training and practical tools.\u00a0 The PA is the link between patients, families, caregivers, and our organization in The Netherlands.<\/p>\n
This initiative benefits all patients, also those in The Netherlands.<\/p>\n
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.<\/p>\n
We want to have at least 10 PA\u2019s, from all over the world, in a workshop during our world-wide conference in The Netherlands. \u00a0The workshop has the goal of training the attendees as well as sharing ideas, knowledge, and experiences.\u00a0 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.<\/p>\n
Our PA\u2019s can reach patients (and vice-versa) through social media, local patient organizations, local doctors organizations, and local news providers.\u00a0 We can, for example, provide the material and information.\u00a0 We would also like to design training and materials for future PA\u2019s.<\/p>\n