News

Personal stories may not only help other patients and parents but yourself as well

Published on: 02/07/2021

Personal stories may not only help other patients and parents but yourself as well
Rare Diseases
Member News

This is the fifth article of the Dutch, global and non-profit patient organisation for patients with CMTC and other vascular (bloodvessel) malformations, families and healthcare providers.

In this edition, we discuss personal stories. Sharing personal stories is greatly appreciated! This can be done anonymously, by name and only for members.

Our organisation was founded in 1997. The babies then are adults now. Over time, they have acquired important knowledge and experience, all of which are of great value for parents with young children with vascular malformations. Writing a personal story is an easy and quick way not only to help other people but possibly yourself as well.

Do you also want to share your personal story? Please contact us.

Discover more about CMTC-OVM

CMTC-OVM is a worldwide non-profit patient organization that aims to improve the quality of life of people suffering from vascular abnormalities (blood vessel abnormalities), such as CMTC (‘Van Lohuizen syndrome’), and stimulate scientific research on these disorders. 

NEWS​

Related News

New Round Tables announced to drive progress on EHDS and health AI

3 Jul 2025

The European Accessibility Act Is Here. Are You Ready?

2 Jul 2025
Why inclusive design is no longer optional – and how Big Motive can help you lead the way.

DTH-Lab Director: The G7 must act now to address the digital health transformation

2 Jul 2025
As digital platforms increasingly shape health systems and information flows, the G7 must lead in setting global standards to ensure safety, equity an...

InnoHSupport Open Calls

1 Jul 2025
Welcome to the InnoHSupport Open Calls!

Transformative Health Instrument Call 2025

1 Jul 2025
Apply to the Transformative Health Instrument (THI) Call 2025 if you are a growing and innovative healthcare start-up working on solutions that have s...

Longitude Prize on ALS

1 Jul 2025
The £7.5 million (~$10 million) Longitude Prize on ALS incentivises the use of AI-based approaches to transform drug discovery for amyotrophic lateral...

Become a member

Join ECHAlliance to amplify your organisation’s message, grow your networks, connect with innovators and collaborate globally.
 
First name *
Last Name *
Email Address *
Country *
Position *
First name *
Last Name *
Email Address *
Country *
Position *