This year, the Belgian Flemish Pulmonary Hypertension Association, PH Belgium – Pulmonale Hypertensie vzw, worked on four main pillars: education, advocacy, peer support, and support for scientific research. It was an exciting year, filled with interesting discussions, inspiring collaborations, and meaningful connections with peers!
1.1 Education
Working Together on Better Education about Pulmonary Hypertension (PH-PIP Project)
PH Belgium – Pulmonale Hypertensie vzw, together with the Belgian French pulmonary hypertension association Hypertension Artérielle Pulmonaire Belgique (HTAP Belgique) ASBL, and the Belgian Patient Expert Center, have launched a special project: developing clear and reliable information for people with pulmonary hypertension. This is being done in collaboration with healthcare providers, patients, patient organizations, and the pharmaceutical industry.
The goal? To ensure that everyone can find understandable and accessible information about PH in one place.
Why is this project important?
When faced with a diagnosis like pulmonary hypertension, you often have many questions: What does this mean exactly? What lies ahead? Unfortunately, not all information online is reliable or complete. By creating a central place with clear explanations, we aim to provide patients with more peace of mind and confidence.
Good education also helps patients better prepare for conversations with their healthcare providers. You can ask targeted questions and better understand what doctors explain. This makes a big difference because well-informed patients often feel more engaged in their treatment and experience better outcomes. It also benefits healthcare providers, as they can focus on complex, personalized questions rather than repeating basic information.
How does it work?
This project begins with what patients need. In the first step, workshops are organized where patients, healthcare providers, and other stakeholders discuss important information. A list of priorities is then created, focusing initially on what patients need to know at the time of diagnosis. This information will be compiled into a handy “support kit.”
This project is supported by the Prince Philippe Fund (KBS), MSD, Janssen-Cilag, and Gossamer Bio.
French-Language Webinars: Learn from the Comfort of Your Couch
As a patient, you encounter a lot of information, and it’s not always easy to understand what your doctor is talking about. During consultations, there isn’t always enough time for a detailed and illustrated explanation. That’s why we organized a series of informative webinars this year, focusing on French-speaking patients, in collaboration with Prof. Jean-Luc Vachiéry and his multidisciplinary team at the Erasme University Hospital in Brussels. From the comfort of their couches, patients and their families could learn more about pulmonary hypertension, standard treatment options, and how to support their treatment. Curious about the topics covered? You can rewatch the webinars on our website.
QR code: https://ph-vzw.be/fr/infotheek/webinaires/
1.2 Advocacy and awareness
Colorful Rare Disease Day
All the colors of the rainbow—these were everywhere on Rare Disease Day! It was impossible to miss. Across the country, buildings, houses, offices, and especially nails were adorned with color, as seen on social media. We also got creative with color! Equipped with colorful wigs and clothing, and under the creative direction of team member Anne-Lies, we produced videos and photos that were shared on our social media during the week of February 29. It was a success! On social media, where we saw all the colors of the rainbow, among patients and their families, and even politicians, including our Prime Minister Alexander De Croo and Minister of Social Affairs and Public Health Frank Vandenbroucke. In the public eye, such as the iconic Port House in Antwerp, which received a splash of color thanks to the efforts of our vice-chairperson An. Even in the press, people with rare diseases were well-represented, including Prof. Marion. Delcroix of UZ Leuven and some pulmonary hypertension patients.
Successful Campaign: ‘Move for Pulmonary Hypertension’
In May, to mark World Pulmonary Hypertension Day on May 5th, the second edition of the campaign ‘Move for Pulmonary Hypertension’ took place. This initiative aimed to raise awareness and collect funds for research and treatment of pulmonary hypertension (PH).
Activities
The campaign featured a variety of activities designed to encourage people to get moving while raising money. In total, participants covered an impressive 13,232 kilometers and raised €1,750:
- Strava Club: Participants could register on the Strava app, a fitness platform where they shared their achievements and distances with other members of the group ‘PH Belgium – Pulmonary Hypertension vzw.’ In May, the club collectively achieved a remarkable 13,232 kilometers.
- Corporate Challenges: Businesses were encouraged to form teams and participate. These activities not only raised funds but also fostered team spirit and awareness within organizations. For example, MSD organized a 6MWD (Six-Minute Walk Distance) challenge among colleagues, while GossamerBio added a fun twist by having colleagues walk the 6MWD backward. Janssen (Johnson & Johnson) also helped spotlight World PH Day (WPHD). Local hospitals contributed as well, with the pulmonary hypertension physiotherapy team at UZ Leuven organizing an extra challenging 6MWD, carrying colleagues on their backs.
Communication
To reach a wider audience and maximize impact, a promotional video was created this year featuring Hilde Heynen, ambassador of PH Belgium. The video, along with other messages, was widely shared on social media platforms such as Facebook, Instagram, and LinkedIn. A heartfelt thanks to everyone who participated and supported this campaign. You were amazing!
Watch the promotional video here
Sharing Stories about Living with Pulmonary Hypertension
Over the past year, several patients and caregivers shared their personal stories as testimonials. These stories provide valuable insights into the experiences of people living with pulmonary hypertension. We thank all participants for their courage and openness. Sharing personal experiences can have a powerful impact and inspire others.
Pulmonary Hypertension and rare diseases in the press
Collage of press articles and QR codes:
Annelies (27): ‘I am not afraid of dying anymore. I’ve made peace with it’ https://www.flair.be/nl/talks/straf-verhaal/annelies-pulmonale-hypertensie/ (paywall).
Vic has a Rare Disease – https://www.youtube.com/watch?v=mbCoL4N4zQY
When a Serious Illness Isn’t Taken Seriously – Artist newspaper 08 October 2024
PAH: Vague Symptoms and Lack of Awareness Delay Timely Diagnosis – https://nl.planet-health.be/mijn-longen/pah-vage-symptomen-en-gebrek-aan-bewustzijn-bemoeilijken-tijdige-diagnose/
1.3 Peer support
Regional Days: A Cozy Gathering for Patients and Supporters
On Sunday, April 21 and 28, we came together for our Regional Days, an opportunity for patients, their families, and supporters to meet and share experiences. The gatherings took place at various locations in Flanders, where we enjoyed snacks and drinks in a relaxed atmosphere.
These meetups were the perfect chance to ask questions to the board, catch up with other patients, and meet new people. Nothing is more valuable than sharing your story with others who understand what you’re going through. The gatherings fostered a sense of connection and support.
1.4 Supporting scientific research
Contribution to Scientific Research: €7,500 for Basic Research on Pulmonary Hypertension
We are pleased to announce that this year, thanks to your actions and donations, we are making a significant contribution to scientific research on pulmonary hypertension. With the support of our members and supporters, we have reserved €7,500 for the research of Professor M. Delcroix and her team at KULeuven.
This valuable sum will be used for basic research on pulmonary hypertension, aiming to expand knowledge about this rare and complex condition. The research conducted by Professor Marion Delcroix and her team may hopefully contribute to new breakthroughs that improve the quality of life for patients worldwide.
Thanks to everyone who supports us, we are taking an important step toward more understanding and progress in the fight against pulmonary hypertension. Together, we hope to make a difference!
