“My name is Pernille Henriksen and I have primary lymphedema of the left leg. Primary lymphedema is a rare disease with an estimated prevalence of 1 in 6,000 individuals within the general population. It is characterized by swelling (edema) of certain parts of the body. It is a chronic progressive condition. One of the problems patients have is to get a timely and correct diagnosis. Another problem is the lack of knowledge, among clinicians, of the associated complications and how to manage it correctly. I recently joined the board of the Danish patient organisation for lymphedema (DALYFO) and we decided to seek representation in VASCERN to be able to address these pertinent issues. DALYFO was founded in 1992 and one of our missions is to raise awareness with clinicians, policy makers and the general public. We believe that by collaborating with other patient organisations in Europe and having Danish representation in VASCERN we can achieve this.”
Pernille joined the VASCERN ePAG in May and has already attended her first ePAG and PPL-WG virtual monthly meetings, where she was introduced to both of the groups and warmly received by everyone in attendance.
We welcome Pernille to the VASCERN family and look forward to working with her. Pernille has already been very active in finding new potential future ePAG advocates for PPL in several EU Member States. We are still looking for patient advocates to strenghten our patient group for pediatric and primary lymphedema and work with Pernille and the group of PPL clinicians.
As a reminder, the 5 ePAG Co-Chairs of VASCERN (one per Rare Disease Working Group (RDWG)) participate in the corresponding RDWG monthly virtual meetings and activities as well as the monthly ePAG virtual meetings. They make the link with the other ePAG patient advocates and ePAG member organisations of the VASCERN ePAG in order to feedback about VASCERN’s activities and to include the views of the patient community in all of our work. Some of our ePAG Co-Chairs also hold monthly meetings with their own group of patient advocates.
Patient organisations can register at this link to become ePAG member organisations in VASCERN. In order to become an ePAG patient advocate, you need to be a member of an established patient organisation in Europe and to be appointed as representative for ERN activities by the Board of your patient organisation.
For all information please see the Eurordis European Patient Advocacy Groups (ePAGs) information page here.