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 […]
Rare diseases day Netherlands 2017
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 28 February 2017 marked the tenth international Rare Disease Day. On and around this day hundreds […]
Rare diseases day Netherlands 2016
Rare Disease Day takes place on the last day of February each year. This year 29 February was Rare Disease Day.The main objective of this special day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The day was launched in Europe in 2008 by […]
Rare diseases day Netherlands 2015
On Saturday, February 28, 2015, the worldwide rare disease day was organized, in the Netherlands. This time Burgers ‘ Zoo in Arnhem was chosen as the site. Special activities were organized for children, and the participants could visit the zoo after the event. The reception included special giraffe cookies. After the opening came a number […]
VBF 2019 – Athens
The American organisation “Vascular Birthmarks Foundation” held a conference in Athens (Greece) on 7 and 8 June 2019.Our secretary, Anja Fluijt, participated on behalf of our organisation. The opening of the Congress on Friday, June 7 is scheduled at 8.00 pm. That means getting out to of bed early. I am staying at the home […]
VBF 2018 – New York
On behalf of our organization, Lex van der Heijden attended the annual conference of the Vascular Birthmarks Foundation (VBF) in New York on Saturday, October 6, 2018. There were approximately 300 participants. We have been aware of this organization, founded by Dr. Linda Rozell-Shannon (she has a daughter with a vascular disease herself), for over […]
VBF 2006 – Boston
On behalf of our association, Lex van der Heijden the annual conference of the Vascular Birthmarks Foundation (VBF) on invitation visited Boston in the USA. This conference began on October 27 at the start of the evening and lasted until the afternoon of 28 October. Altogether approx. 200 people comprising mostly patients and parents of […]
NORD 2019 – Washington DC
On 20, 21, and 22 October the American Organization for Rare Disorders NORD organised another annual congress with around 900 participants. On Sunday afternoon a special session was organised for the Patient Leaders. We were placed into groups and a specific subject was discussed per table. Lex participated in the discussion on good governance and board […]
NORD 2017 – Washington DC
NORD, the American National Organization for Rare Disorders, held its annual conference on 16 and 17 October 2017 in Washington DC. Becky Gallis participated in this conference on behalf of CMTC-OVM US, and Lex van der Heijden did so on behalf of CMTC-OVM Nederland. We have been participating in this conference since 2004, and thanks […]
