AIVA Conference 2025 – Austria
From March 7 to 8, 2025, the 15th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. This year, the event was held jointly with the 6th Annual Conference of DiGGefa (German Interdisciplinary Society for Vascular Anomalies e.V.). As the CMTC-OVM patient representative […]
CMTC-OVM Rare Disease Day 2025 video
Worldwide, Rare Disease Day is organized on the last day of February. Again this year, we have made a video in this context.
Blog Arianna Faro January 2025
There are a lot of times when I am extremely hard on myself. I have a tendency to compare myself to other people my age who have achieved wonders and will then proceed to mentally shame myself for not having done the same. For so long, I’ve created this narrative in my head that I […]
Skin at school
The implementation of the “Skin at School” program in the Netherlands is motivated by several factors. Skin complaints are often underestimated, which affects the quality of life of people with chronic conditions and contributes to significant bullying problems in children. In every classroom there are children who suffer from skin problems such as warts, athlete’s […]
Blog Katie Allen January 2025
One of the scariest things that my condition has caused is medication uncertainty. I am currently going through this with a new medication, so I figured I would take this blog as an opportunity to discuss this experience. I am currently suffering from migraines, and we are unsure if they are CMTC-related or not, but […]
Mental Health & Wellbeing
The European Organization for Rare Diseases (Eurordis) has developed a wonderful website with a wealth of resources on mental health and well-being. We have also participated in this project. The relationship between physical and mental health is well-documented. An increase in the severity and complexity of a physical condition increases the risk of mental health […]
Policy vision on centers of expertise for rare diseases 2025
An expertise center for a rare disease is often a facility within a hospital that specializes in a specific rare condition. To gain recognition as an expertise center, an application can be submitted to the Ministry of Health, Welfare, and Sport (VWS). With this recognition, an institution can join a European Reference Network (ERN), allowing […]
Blog Katie Allen December 2024
[vc_section full_width=”stretch_row” css=”.vc_custom_1585128400841{background-color: #576283 !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][/vc_column][vc_column width=”2/3″][vc_empty_space][mk_fancy_title strip_tags=”true” tag_name=”h1″ color=”#ffffff” size=”60″ line_height=”90″ font_weight=”bolder” margin_bottom=”0″ font_family=”none”]Blog Katie Allen December 2024[/mk_fancy_title][mk_divider style=”thick_solid” divider_width=”custom_width” custom_width=”70″ align=”left” border_color=”#a1aabe” visibility=”hidden-sm”][mk_fancy_title strip_tags=”true” tag_name=”h5″ color=”#ffffff” size=”16″ font_weight=”400″ margin_bottom=”0″ font_family=”none”]Personal experiences – Katie Allen (Canada)[/mk_fancy_title][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space height=”64px”][/vc_column][/vc_row][/vc_section][vc_section full_width=”stretch_row” css=”.vc_custom_1585137324203{background-color: #ffffff !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_wp_custommenu title=”Blogs” nav_menu=”274″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2024/12/katie-dec2024-web.jpg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1735123331913{margin-bottom: 0px !important;}”]Happy December […]
Blog Arianna Faro December 2024
My name is Arianna Faro, and I was diagnosed with Klippel-Trenaunay syndrome at birth. I am now 33 years of age (on the cusp of turning 34) and have had a great deal of time to reflect upon my past in recent times. Before I delve into some of that, I would like to first […]
What is PROS?
PROS, or “PIK3CA-Related Overgrowth Spectrum,” is a group of conditions caused by changes in the PIK3CA gene. This gene plays a role in cell growth and development. A mutation in this gene can cause certain cells to grow too quickly or excessively, leading to tissue and organ overgrowth. The severity and type of overgrowth can […]