Below you will find an overview of the patient advocates by country. If you are a member of the worldwide Dutch CMTC-OVM organization and you live in a country where there's no patient advocate yet and you are interested in becoming a patient advocate please contact us via This email address is being protected from spambots. You need JavaScript enabled to view it.

The CMTC-OVM organisations in Canada and the USA are independent of our CMTC-OVM organisation so we refer to these organisations if you live in one of these countries and you have questions.

Country Photo Biography E-mail address
Argentina My name is Lorena Tuero and I live in Buenos Aires, Argentina. I am a graphic designer and I work at my own company called Orygami. I have two children, Juana (9) and Pedro (7). At first Juana was diagnosed with CMTC and then with M-CM. My goal is to improve the knowledge about CMTC and to establish and maintain contacts with people with CMTC here en Latin America, so please, feel free to contact me!  This email address is being protected from spambots. You need JavaScript enabled to view it. 
Austria My name is Silke Rotter and I'm 39 years old. I received my education in Vienna and have worked since 2000 for the Viennese Government. In 2002 I married Alexander (40). He works as a truck driver for a global pharmaceutical company. We have three children; they were born in 2003, 2005 and 2016. Our little son Niklas was born with DCMO (Diffuse Capillary Malformation with Overgrowth). We are very grateful for the CMTC-global Community.  This email address is being protected from spambots. You need JavaScript enabled to view it.
Belgium I am Catherine Testelin, 34 years, from Belgium. I live in Wevelgem and have worked since 2006 as a trainee mentor and teacher of French in the adult education centre Creo in Kortrijk. I'm trained as a Business Translator-Interpreter and after this I also received my teacher training studies.
I'm married with Wim Vanhaverbeke and together we have two sons Miel (5 years) and Mathis (3 years). Miel was born with a capillary vascular malformation visible in the neck, chest, arm and hand. Since we already got a lot of support from your CMTC-OVM organization (which we did not find in Belgium), we like to contribute to your organization by getting your organisation known in Belgium.
 This email address is being protected from spambots. You need JavaScript enabled to view it.
Brazil Danny Langer    This email address is being protected from spambots. You need JavaScript enabled to view it.
Denmark Christian Aarhus   This email address is being protected from spambots. You need JavaScript enabled to view it.
England Nikki Bailey I am Nikki and my husband is Matthew. We are both Scottish but live in Wales. I am a Social Worker and Matthew is a senior Project Manager. Matthew and I are the parents of six children with ages ranging from 25yrs - 4 yrs. Alfie is our youngest child. We had an uncomplicated pregnancy with a home delivery. Alfie had no marking at all when he was born, however over the next 12 hours, the vascular malformation became evident. His right hand side had strong markings on both his arm and leg, in addition to his torso and right buttock. We were admitted to the local children's ward where the junior doctor was extremely good and said he felt it was a vascular malformation. We were referred to the dermatologist who then referred us to Professor Verbov at Alder Hey where Alfie received a formal diagnosis of CMTC at about 7 weeks. I had already guessed that Alfie had CMTC as I had googled intensively his marks. I was extremely anxious, over protective and tried to become as informed as I could about CMTC. Matthew was more pragmatic, he considered how our son was presenting and has always thought about what we were facing at the moment rather than the panicky catastrophising that I did. Our son is beautiful. He is funny, kind, clever and popular in his class. We have taught him about his marks - what they are called and what causes them and when people ask he can provide basic information. We have been attending the conferences since Alfie was a year old and we have been extremely grateful for the support of the organisation, particularly as Alfie was discharged from Alder Hey at a year old.  This email address is being protected from spambots. You need JavaScript enabled to view it.
Germany Julia & Dirk Exner    This email address is being protected from spambots. You need JavaScript enabled to view it. 
Greece Anestis Giannoudovardis    This email address is being protected from spambots. You need JavaScript enabled to view it. 
India Dr. Ramaiah Muthyala    
Japan Ami Hataya    This email address is being protected from spambots. You need JavaScript enabled to view it. 
Poland   My name is Dorota Blacharska and I live in Szczecin in Poland. I'm a nurse and work in the Department of neurosurgery. I am married to Mariusz (54) and we have three children: Krzysztof (24), Dominika (20) and Ania (7). They all have HAEi and Ania has CMTC. My goal is to increase the knowledge on CMTC and come in contact with people with CMTC. I really want to get in contact with Polish people with CMTC, so feel free to contact me!  This email address is being protected from spambots. You need JavaScript enabled to view it. 
Russia Hello, my name is Anastasia! We live in Russia in St. Petersburg! I am a pediatric dentist. For a long time I worked in a private clinic and taught dentistry at the university. Our son Grisha was born in 2015. After exactly 1 year we received the diagnosis. Grisha has the MCAP syndrome. We ourselves searched for doctors in Russia. Neurosurgeons in St. Petersburg and Moscow could not give a diagnosis. Geneticists stated that we had to wait until Grisha would be one year old. I started researching Grisha's kidneys, liver and spleen myself. These were enlarged. I also checked his blood. Together with my husband we have come a long way. I will help you with pleasure!  This email address is being protected from spambots. You need JavaScript enabled to view it.
Sweden My name is Mattias Lindemann, 44 years old, and I live with my wife Marika and our two children Ville (5) and Milla (3) outside Trelleborg, Sweden. I produce organic soft drinks in my small brewery and my wife runs a family coffee business. Our son Ville was diagnosed after birth with CMTC on his left leg and foot.  We found this organization when we were looking for answers which we didn't find in Sweden. We'd love to get in touch with others in Sweden, because there have the be more of us!  This email address is being protected from spambots. You need JavaScript enabled to view it.