EuropaDerm initiative
We are part of the Global Skin Foundation (based in Canada) and they have started the European EuropaDERM initiative. We participated in the first (online) ‘Envisioning EuropaDERM event’ that was organized on January 29, 2021. For two hours we discussed with other (international) leaders of European patient organizations a common path for the European dermatological […]
Webinar 16 January 2021 – Vascular malformations and overgrowth
We organized our first webinar on January 16, 2021 with the topic ‘vascular malformations and overgrowth’ by Dr. Christianne van Nieuwenhoven. Treatment of vascular malformations and overgrowth Christianne van Nieuwenhoven is a plastic surgeon at the Erasmus Medical Centre in Rotterdam. She is particularly specialised in hand surgery in children. This way she deals with […]
Collaboration with ECH
We have started a new partnership with the European Connected Health Alliance (ECH). The goal of ECH is to connect organizations and individuals in the field of digital health. Currently, more than 750 organizations are affiliated with ECH from 78 countries and can reach 4.4 billion people. More information
Vaccination advice COVID-19
We are member of European Reference Networks (ERNs) and they offer a unique opportunity for physicians to work cross-border in healthcare in Europe. ERNs create a clear governance structure for knowledge exchange and care coordination across the European Union to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for […]
16. Patient included
Talking to the patient instead of talking about the patient. Patient included brochure
15. Poster CMTC patient journey
A possible journey for a CMTC patient and family. Poster CMTC patient journey
14. General practitioners booklet CMTC
A practical booklet for GPs (and other healthcare providers) about CMTC. General practitioners booklet CMTC in multiple languages
12. Conversation health care provider folder
A practical folder for a discussion with a healthcare provider. Conversation with health care provider folder in multiple languages
07. After the diagnosis booklet
A practical booklet for parents after they have received a diagnosis. After the diagnosis booklet in multiple languages
06. Psychology folder
A practical folder on the psychological aspects of living with a rare disease. The psychology folder in multiple languages