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 […]
NORD 2016 – Washington DC
On 17 and 18 October 2016, the American organization for rare diseases NORD organised the annual conference in Washington DC. On behalf of CMTC-OVM US, Becky Gallis took part in this conference, and Lex van der Heijden attended on behalf of CMTC-OVM Netherlands organization. The number of participants was around 600. Below is a short […]
NORD 2015 – Washington DC
The American organization for rare diseases NORD held their annual conference on October 21-22, 2015, in Washington DC. The number of participants was more than 500 from all over the world. We as the CMTC-OVM organization have been for many years member of this organization. Representatives of the European organization for rare diseases Eurordis and […]