Patient Advocate Inventory

Welcome to your Patient Advocate Inventory!

This survey is intended to make an inventory in order to select the right people for Patient Advocate (PA) roles within our global non-profit organisation.

We have started a global project to recruit and educate PA's on our expenses in 2020 and this will be finished in 2022. The project is intended to fly PA's from all over the world to the Netherlands and educate our PA's, during a workshop, on our expenses. Because of our investment we need to make a proper selection of the PA candidates.

The workshop is combined with our global member conference in the Netherlands. One of the deliverables is to build an e-learning environment as well based on the input and output of the workshop.

For more information regarding our PA project please click here

What are the main requirements of a PA must meet in our organisation:

1. Member of our organisation.
2. At least moderate (preferably good/fluent) in English reading, writing, speaking & listening.
3. BSc of higher level by experience or education.
4. Patient or family member of a patient with vascular malformations.
5. Fluent in the local language(s) in reading, writing, speaking & listening.
6. Moderate/good skills with MSOffice esp. MSWord.
7. Moderate/good skills with Internet tools such as website browsers.
8. Having an Internet connection of at least 20 MB to participate in for instance video conferences.
9. Having an active attitude.

What are the main tasks of a PA:

1. Being able to inform patients, families and caregivers about CMTC and OVM at high level in their local language.
2. Establish contacts with (local) hospitals (departments of dermatology and blood vessel abnormalities) and inform them of the existence of our worldwide organization.
3. Establishing contact with general practitioners and/or contact network organizations of general practitioners.
4. Find local patient organizations and other organizations in the field of dermatological and / or blood vessel abnormalities in that country.
5. Distribute our information folders which are available in many languages.
6. Search social media Facebook groups in the specific country for rare diseases, dermatology, blood vessel abnormalities, etc.) and participate in and start discussions.
7. Translate text from English to the local language(s) and vice versa.

We have a special incentive fee program for our PA's!