HOOG Consultancy
Eline Hoogstra
"An experienced and driven project manager with over 20 years of experience in the online industry and patient advocacy."
Up until september 2023 I represented the Dutch patient organization NLNet for primary and pediatric lymphoedema in the
ERN (European Reference Network) Vascern as the Dutch patient advocate.
During this period I met many great passionate fellow patient advocates, patients and doctors. We worked closely on numerous European projects. I would like to thank them all for the great cooperation.
The Patient Journey and the World Lymphedema campaign which resulted in a new partenrship among 27 European patient organizations and the website
www.compressionineurope.org are just a few examples I would like to share with you.
Please, if you have any feedback, tips or you would like to join, always happy to hear from you!
In order to be a good patient advocate I believe you really need to understand the needs and challenges of the patients you represent. Therefor I initiated the
patient journey project.
Together with the
Dutch expert center for lymphoedema (Nij Smellinghe) we developed a patient journey questionnaire. I interviewed 35 patients or their parents. The results were presented on the International Lymphoedema Framework Conference. The outcome formed the basis for my work as patient advocate in my ePag PPL working group. There are still many challenges to tackle.
Poster presentation ILF Patient Journey, click here
World Lymphoedema Day
In 2020 we launched a successful World Lymphoedema Day campaign. Based on this collaboration among many patient associations we decided to unite again in 2021.
"Put compression #underpressure"
A Google Form survey was created with one single statement:
“I struggle to obtain the necessary garments to manage my lymphoedema or that of the person I care for (prior to the pandemic or without cause of Covid19)”
We recieved over
1100 responses and 59%
of the respondents indicate they struggle to obtain the necessary garments to manage their lymphoedema and lipoedema.
Compression in Europe
Based on the outcome of our survey we developed a website, an European initiative of lymphedema and lipoedema patient advocates to put compression #underpressure.
A website with basic tips and tricks for people wearing compression garments.
www.compressionineurope.org.
The logo and great illustrations are made by
Tessa van Vuuren.
