VASCERN Spotlights: Juergen Grunert
This month it’s Juergen Grunert, the European Patient Advocacy Group (ePAG) Co-Chair for our Medium-Sized Arteries Working Group (MSA-WG), who is in the VASCERN Spotlight! Read about his most memorable moment as an ePAG representative so far and his hopes for VASCERN and for the ERNs in general.
1) How did you become involved in the VASCERN project?
I read about the upcoming creation of the ERN’s in the Eurordis Newsletter and had also been contacted directly by Anja Helm and Lenja Wiehe (from Eurordis) for the ePAG elections. I decided to candidate as a patient advocate for this new chance at collaboration between healthcare providers, researchers and the patient community.
2) How do you as an ePAG representative participate in the activities of VASCERN?
The patient’s view is allocated to every single stage and activity of the network. So, I am of course very involved as the ePAG Co-Chair of the Medium-Sized Arteries Working Group (MSA-WG), but also in the VASCERN ePAG patient group as one of rotating hosts for the monthly meetings, as a deputy for the ePAG Steering Committee and a member of the ePAG transversal communication WG. There is an intensive exchange between the patient representatives, the coordinator and the HCP representatives. A lot of e-mails and papers have to be read and a number of videoconference calls take place every month. I am equally an ePAG representative for another ERN, ReCONNET, which is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases.
3) What is one thing that you would like patients with a rare disease diagnosis to know?
There are a lot of people out there who aim to help you receive a better and quicker diagnosis and access better therapies as well as improve your quality of life. You are not alone (although you might think that from time to time).
4) Can you tell us a little about your rare disease and/or the patient association that you represent?
Ehlers-Danlos-Syndromes (EDS) are a spectrum of rare hereditary connective tissue disorders that have many multisystemic manifestations (including joint hypermobility, skin hyperextensibility and tissue fragility). In VASCERN, we deal especially with vEDS, the vascular type of EDS. It is a life threatening condition and early diagnosis and continuous monitoring are essential. I am the Chairman of the Deutsche Ehlers-Danlos-Initiative e.V., the oldest patient organization in Germany. We represent nearly 400 families of one or more EDS patients. We are working hard to connect research and health care in order to create a beneficial network for patients within Germany.
5) What has been your most memorable moment as an ePAG representative so far?
My most memorable moment was the Kick-Off Meeting for the 24 European Reference Networks in Vilnius in March 2017. So many enthusiastic and engaged people, united in one big room, all desiring to bring real benefits to patients with a rare disease in Europe.
6) As a patient representative, what is your hope for VASCERN and for the ERNs in general?
The path that we have started to walk together will surely have a great impact on the development of further diagnostic criteria, clinical guidelines and patient outcomes as well as the development of new therapies. There is an entirely new level of communication and cooperation happening between the different players within the networks. Cross border healthcare and virtual consultations (via the Clinical Patient Management System) will bring a lot of advantages to the patient community.
