Patricia took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .
a) Tell us a little bit about yourself
In 1990, while leading a very active life, practicing law, enjoying horseback riding and ballroom dancing, I found myself suddenly fully paralyzed, on the ICU, ventilated for more than a month, due to Guillain-Barré syndrome (GBS).
A visit from a recovered GBS patient lifted my spirits and gave me hope. It also made me wonder whether there was a support organization for GBS in my country and I vowed that if there was none, I would start a support group. After my recovery, I founded a group which later merged with Spierziekten Nederland, the Dutch neuromuscular patient organization.
At an early stage, I also became involved with the GBS|CIDP Foundation International. Initially, as a local volunteer (liaison), but within a few years as Regional Director, responsible for the Foundation’s international volunteers, and in 2005 as Member of the Board of Directors.
Both the Foundation and the Dutch group entertain excellent relations with the world’s leading experts on GBS and CIDP, which ensures a fruitful collaboration between patients and scientists, resulting in patient involvement in important research projects and publications. Over the years, it has been my privilege to represent the patient community on many occasions.
b) Why are you joining EURO-NMD?
On the basis of my personal experience and my involvement with both patients and experts during the past three decades, I am confident to be able to make a valuable contribution to the work of EURO-NMD. In rare diseases, collaboration between countries as well as collaboration between patients and the medical community, is indispensable to provide the best care for those who are affected by these disorders. I believe it is our duty to advocate on behalf of fellow patients who might not be able to obtain the best of care when faced with neuromuscular disorders.
c) What are your expectations of the Network?
The Foundation’s vision is that every person affected by GBS, CIDP, or related syndromes will have access to early and accurate diagnosis, appropriate treatment, and knowledgeable support services.
I fully endorse this vision and I firmly believe that EURO-NMD is an excellent instrument to accomplish this particular goal on behalf of all patients with these rare and terrifying disorders in Europe, therefore not only for those who have close and easy access to a center of expertise.