Dr. Andrea Diociaiuti (Italy) – Medical advisor
Andrea Diociaiuti is currently responsible for the Center of Chronic and Complex Disease and Genodermatoses of Bambino Gesù Children’s Hospital in Rome. Graduated in Medicine in 1995 and specialized in Dermatology and Venereology in 1998 at the University of Sacred Hearth in Rome. He achieved his Ph.D. in Oncological Dermatology and then a II level […]
United Kingdom – Julia Putman (heeft zich teruggetrokken op 15 jan. 2022)
[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”]Julia Putman (United Kingdom)[/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”]Patient Advocate[/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=”Patient Advocacy” nav_menu=”275″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2021/10/julia-putman-klein.jpg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1633428780577{margin-bottom: 0px !important;}”]I’m a Therapeutic Practitioner working with […]
Ronald McDonald vacation homes
When your child is chronically ill, as a parent you want to provide the best care possible. But, there’s so much more to it. It also asks a lot of you and your family. Tension, worries, fatigue, and sometimes even misunderstanding. Perhaps it feels like you are being lived or as if you are living […]
Members conference 2021
On Saturday October 30, 2021 we will organize our annual global members conference in the Netherlands. Due to the COVID-19/Corona virus, we unfortunately have to organize this conference ‘online’ this year. More information & registration Please note: if you have previously registered for our conference on location, please register again. We expect our conference to […]
Molly (USA)
Molly was able to share her perspective from her experience as a person with physical challenges and also what she’s learned from doing volunteer work with others. We have sent Molly special ‘kanjer’ (champion) stroopwafels as a token of our appreciation. ‘Kanjer’ in this context does not only mean that these are extra large stroopwafels, […]
Kenneth (Norway)
This is the story of Kenneth, told by his mother. Kenneth was born on February 18, 1994 in Harstad, Norway. He was born by caesarean section. He weighed 4150 grams, and was 53 cm long with a head circumference of 40,5 cm. We were sent to Tromsø University Hospital where he was in an incubator […]
Germany – Stefanie and Oriol
We are Stefanie and Oriol, parents of a little girl with CMTC. We currently live in Düsseldorf (Germany), where Stefanie works as a Supply Chain Professional and Oriol as a Telecom Engineer. We found the CMTC-OVM organization when we were looking for answers after receiving the diagnosis, which we could not find in Germany. We […]
Webinars
We regularly organize public webinars. Reports are also made of these webinars. Webinar overview and registration Webinar reports Do you have an idea for a webinar topic? Please contact us
Becca (USA)
When I entered the world on July 10, 2009 everyone thought things were going to get easier. I guess I proved everyone wrong! When I was born I had a very unusual coloring on my right leg that the doctors had never seen before. They first thought I had broken or dislocated my leg while […]
Katie (Canada)
My name is Katie and I was diagnosed with CMTC when I was 5 months old. I am now 28 years old (2021) and have lived with markings down the right side of my body and the left side of my face, neck, and skull all of my life. I have had a few complications […]