5. Possible therapies
This article discusses the various possible therapies and instances that you may encounter. The situation in the Netherlands is discussed here so that the situation in other countries may be different. In the field of therapies, the following are discussed: Physiotherapy. Occupational therapy. Speech therapy. Pre-verbal speech therapy. Complementary therapies. Physiotherapy Physiotherapy (for children) […]
4. What can you do yourself?
For the most part, life continues “as usual” after hearing the diagnosis. Your child needs attention, love and care, perhaps more care than other children of their age. What is the best way to provide this care? You will learn this over the coming months and years with the help of counsellors, doctors and / […]
3. Impact on family
“You are never alone when you have a disability or illness,” people sometimes say. Your child’s diagnosis also has an impact on everyone in the house. When it comes to your first child, you will need to find a new balance as husband and wife. If you already have children, the whole family will have […]
2. Rollercoaster of emotions
There you are, in the hospital corridor, with the diagnosis still echoing in your head. Maybe you already expected it, maybe you are in shock, but the big question is: how do you deal with this and how do you tell your family such as grandfathers and grandmothers? In this article, we try to answer […]
1. Introduction
This guide is for parents who have just heard that their child has been diagnosed with a handicap or chronic illness. After the initial shock. “What does this diagnosis mean? What can I expect? Is it okay to feel the way I feel? How do I deal with it? “After hearing the diagnosis of your […]
Rare diseases Australia & CMTC-OVM
Our first contact with patients in Australia dates back to around 2005. During the Eurordis conference in 2016 in Scotland we met Prof. Dr. Gareth Baynam for the first time and met him again in Israel in 2019 during the CORD conference. High time to really start working together with the aim to help patients […]
Rare diseases Austria & CMTC-OVM
We have known the Austrian organization for rare diseases for many years. During a private holiday in 2019, we were in Vienna, among other places, when we actually visited this organization and gave a pack of ‘stroopwafels’. It is high time to really start working together with the aim to help patients with CMTC and […]
Rare Diseases China & CMTC-OVM
We regularly come across rare diseases organizations at various international conferences that are committed to an entire country, such as NORD for the USA. This time China is discussed. High time to really start working together with the aim to help patients with CMTC and other blood vessel diseases and their families where possible. More […]
Thinking the other way around in patient organizations
In the Netherlands, patient organizations are taken very seriously. The Ministry of Health, Welfare and Sport (HWS) enables patient organizations to do their work by providing subsidies, for example. In addition, patient organizations are involved in all kinds of policies and activities in many areas of healthcare. We as an organization are a member of […]
Global Member Conference 2020: online
Many (international) conferences have been cancelled in 2020 due to the COVID-19 / Corona virus. Unfortunately, this also applies to our worldwide member’s conference in the Netherlands on October 24, 2020. Instead, we organize an ‘online’ members conference via ZOOM. In doing so, we take into account the time zones where our members live (such […]