Chloe’s story (USA)
Chloe was born in June of 2012. The next day, we noticed that her right arm was purple, but we dismissed it thinking that her hospital bracelet was on too tight, or possibly even that she was just very cold. The purple marbling persisted through our entire hospital stay (5 days because I had a […]
My name is Indra (Netherlands)
My name is Indra, I am 41 years old and mother to my son Mees (6). My story begins on the 14th of June 1977, when I was born at the academic hospital in Groningen. Immediately after birth, they noticed a deviation on my right arm. On the basis of what they saw alone, they […]
Our youngest son is a child with extra bonuses (Belgium)
Our youngest son is a child with extra bonuses. Our son was born after 36 weeks of pregnancy suffering from the HELLP syndrome. I had a lot of stress during my pregnancy. Pains and discomforts were attributed to me ‘being pregnant’, so I was afraid to make a fool of myself. Until I had an emergency delivery at […]
Julian’s story (Germany)
About three weeks after Julian’s birth, his mother noticed that something was wrong with his left eye. It seemed to be bigger than the other one. Because of that, he was hospitalized at the University Hospital Düsseldorf where he was diagnosed with either CMTC or Sturge-Weber syndrome. Since Julian has mixed symptoms of both diseases, […]
Training ERN Skin 2019 – Ghent
In 2017, the European Reference Networks (ERNs) were established in collaboration with the European Organisation for Rare Diseases Eurordis (www.eurordis.org). ERNs are virtual networks of healthcare providers from all over Europe. Their goal is to start a debate on complex or rare diseases and conditions that require highly specialised treatments and a combination of knowledge and resources. […]
EADV 2018 – Paris
The European Academy of Dermatology and Venereology (EADV) held their annual congress in Paris from 12th to 16th September 2018. We were invited by the Global Skin Foundation in Canada to participate in this worldwide congress attended by a thousand medical specialists. Prof. Dr. Suzanne Pasmans and Prof. Dr. Peter Steijlen, two of our medical […]
Rare diseases day Netherlands 2020
World Rare Disease Day took place on 29th February 2020 and for the twelfth time, VSOP was involved in its organization. This year, VSOP organized the meeting ‘Rare – Stronger Together’ in Madurodam, The Hague. Over 100 participants were inspired by presentations from patient representatives and others. Topics such as the psychosocial consequences of a […]
Rare diseases conference Austria 2019
Silke and Alexander participated in the rare diseases conference in Austria (Salzburg) on behalf of our organisation on 8 and 9 November 2019.On Saturday, the joint meeting began with registration at 8 a.m. At 9 a.m. we had the first meeting with lecturers on periodic fever syndromes and familial diffuse stomach cancer.At 10 a.m. we […]
Rare diseases day Netherlands 2019
During the international Rare Disease Day, every year on the last day of February, awareness is raised for people with rare disorders. These events take place in many countries. This way, it is hoped that rare diseases will become more publicised. In the Netherlands, the VSOP (Association for Cooperating Parents and Patients Organization) organises the […]
Rare diseases day Netherlands 2018
During the International Rare Disease Day, attention is paid annually to people with rare diseases on the last day of February. Events take place in many countries. In this way, it is hoped to bring more rare diseases into publicity. In the Netherlands, the VSOP (Association of Cooperating Parents and Patients Organization) organizes the annual […]