Argentina – Josefina Obiglio
My name is Josefina Obiglio, I live in Argentina and have been working in Human Resources since 2005. I am married to Ignacio and together we have 3 children. Our oldest was born with the Klippel-Trenaunay vascular malformation. From the beginning, our goal was to create an interdisciplinary team that would guide and support us. […]
South Africa – Erika & Leon Whitlock
We live in South Africa. Both of us work in the medical and pharmaceutical industry. We recently joined the organization (2023), when our daughter was born with what looked like severe port wine stains all over her body. Research into her condition of DCMO and local rare disease connections brought us to CMTC OVM NL […]
Slovakia – Magdaléna Kohutová
My name is Magdaléna Kohutová and I live in Košice, the second largest city in Slovakia. I work as an IFRS specialist in the finance department of a company that owns a chain of hospitals and outpatient clinics in Slovakia. In my spare time I enjoy jogging, walking and spending time with my family and […]
Germany – Martina Peters
Ik ben Martina Peters uit Langenhagen/Duitsland. Ik ben geboren in 1971 en werk al meer dan 20 jaar als leraar op een vakschool voor elektrotechniek en werktuigbouwkunde in Hannover. Toen Nele, mijn jongste van drie dochters, in 2011 werd geboren met CMTC, wist niemand in een ziekenhuis in de buurt waar haar plekken door werden […]
Spain – 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 […]
Georgia – Prof. Dr. Tinatin Tkemaladze
Prof. Dr. Tinatin Tkemaladze is the head of the Department of Molecular and Medical Genetics at Tbilisi State Medical University (TSMU), as well as consultant clinical geneticist at several major pediatric hospitals. Tinatin has special interest in inherited metabolic diseases presenting as childhood neurodevelopmental disorders and syndromes with dysmorphic features. Over the last several years […]
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 […]
Canada – Katie Allen
My name is Katie Allen and I was diagnosed with CMTC when I was around 5 months old. I have marks covering the right side of my body and the left side of my neck, face, and head. Additionally, I have experience with limb length discrepancy, and other impacts such as difficulties maintaining body temperature […]
Greece – Anestis Giannoudovardis
My name is Anestis Giannoudovardis, I live and work in Athens Greece. I was born in 1973, and I‘m an accountant. I have three children, Alexandros (2004), Filippos (2012) and Despoina (2014). My little daughter Despoina, when she was born she diagnosed with CMTC. The help from my country about this rare disease was not […]
Japan – Ami
Hello, my name is Ami from Japan. I currently work for a world leading Executive Training company as a trainer where we help people to increase their confidence, communication, human relationships, leadership and stress management skills. I was born with CMTC and from a small age this effected my confidence, since due to the rarity […]
