Eurordis 2008 – Copenhagen
Lex van der Heijden represented our organization at the annual Eurordis meeting. Each year this meeting is held in a different European country and this year it was the turn of Copenhagen, Denmark.The meeting was held on the 16th and 17th of May at a conference center, and was attended by approximately 140 people (in particular patients’ […]
Eurordis 2007 – Paris
We as an association are affiliated with several major international organizations such as Eurordis. This is a major international non-profit organization specifically representing the interests of Europeans with rare diseases. Eurordis has contacts at many levels, which opens doors for us that would otherwise remain closed. On 4 and 5 May 2007, Lex van der […]
Eurordis 2006 – Berlin
On 5 and 6 May Eurordis (the European non-profit organization for people with rare diseases in Europe) organized a conference in Berlin. Lex van der Heijden represented our association there. It appears that rare diseases are starting to receive more and more focus and attention in several countries. The wife of the German President Eva Köhler […]
Eurordis 2005 – Luxembourg
On 21 and 22 June 2005 a major international conference in the field of rare diseases was held in Luxembourg. The conference was organized by the European Organization for Rare Diseases (Eurordis) and various partners and supported by the European Commission, the Government of Luxembourg and the French organization against neuro-muscular diseases (AFM). On behalf […]
CORD 2019 – Toronto
The Canadian Organisation for Rare Diseases (CORD) organised a conference in Toronto from the 10th through the 12th of May, 2019. Lex participated in this conference on behalf of our organisation. Approximately 140 people were present from countries from all over the world. In addition, again meeting with the old acquaintances, new contacts were made, […]
Ton van Boven
On the 4th of August 2017 one of our members Ton van Boven passed away suddenly at the age of 84 years. She and her husband Jos (he passed away several years ago) were members since 2000 and had a daughter with CMTC. We wish her family and friends a lot of strength to cope […]
Prof. Dr. Arnold Oranje
Prof. Dr. Arnold Oranje passed away on 19th October 2016 at the age of 68. He was our first medical advisor and has contributed a lot to our association. We will miss him a lot. Although he was retired as a professor of child dermatology since 2013 he still worked almost full-time. He travelled a […]
Michelle Gardiner
On June 21, 2015 Michelle Gardiner (England) passed away after suffering a pulmonary embolism on the 18 June 2015. She has not regained consciousness. She was a caring young lady, and it was decided by her family that they thought she would want to donate her organs. She helped three people with four organs. We […]
Ria Maas
Ria Maes died on June 20, 2013, at 61 years old. Ria was one of our volunteers who welcomed our guests in a warm and loving manner during our meetings in the Netherlands. We wish her family the strength to bear this loss.
Makenna
Makenna died on the 13th of September 2012 at the age of four. We offer our condolences to her family during this difficult time.