Vasculitis International was founded by Peter Verhoeven, chairman of Vasculitis Stichting (in the Netherlands), and John Mills, chairman of Vasculitis UK. We had the pleasure of speaking to Peter, whose wife was diagnosed with granulomatosis with polyangiitis (GPA) in 2002, about how Vasculitis International has developed since its inception; how it encourages and supports collaboration between vasculitis patient advocacy groups (VPAGs); and what the future holds for the organisation

“When “I” is replaced by “we” even illness becomes wellness.” (Malcolm X)

The origin of Vasculitis International

In 2015, when a PhD student in the Netherlands needed financial aid to progress promising vasculitis research, Peter Verhoeven, and John Mills, who also received a diagnosis of GPA in 2001, came together and divided the cost between them. “When we closed that first deal, we thought there must be other initiatives that we can work on together to fund like this, and that’s how it all started,” Peter tells us. As a team, Peter and John quickly identified that many countries simply did not have a vasculitis organisation, or only had a small Facebook support group that much of the community may not have realised existed. “Eventually, our mission became to support vasculitis organisations around the world and encourage them to collaborate.”

Busy schedules and a decline in John’s health slowed initial development, but soon Julie Power, founder of Vasculitis Ireland Awareness, entered the scene. “We implemented a collaboration tool called Basecamp to help us work together, and eventually we got the first seven patient organisations on board, organisations who were keen to collaborate, to learn from each other and to help other organisations.” In December 2019 a legal entity was created called Vasculitis International. Vasculitis UK, Vasculitis Ireland Awareness and the Dutch Vasculitis Foundation each donated €5,000 as start-up capital.

Two years on: Peter’s reflections

Since its inception, Vasculitis International has gained global interest from vasculitis organisations. “We have quite a few parties showing high interest to be involved with us, from Spain, Portugal, Poland, America, Chile and elsewhere,” Peter says. “We are beginning to take shape and create some real volume.”

Peter says COVID-19 slowed Vasculitis International’s early progression. “At first we thought it wouldn’t impact us, because we do everything over video calls, but we quickly realised that COVID-19 put an awful lot of pressure on vasculitis organisations to be a source of information for their community.” Peter found himself responsible for writing several articles on the subject of COVID-19 and liaising with medical advisory boards to ensure the community was consuming reliable information: “It was a lot of extra work,” Peter says. Peter believes that the fear surrounding COVID-19 and the strain it put on organisations meant that international collaboration was pushed to the back of people’s minds and instead they focused on looking after their own countries.

“Patient organisations tend to do their own thing in their own countries and don’t really collaborate on an international level. But we need collaboration to create a really strong patient voice.”

Supporting the 20th International Vasculitis and ANCA Workshop 2022 in Dublin, Ireland

Peter explains that the organising committee of 2022’s International Vasculitis and ANCA Workshop, showed keen interest in hosting a patient conference alongside the scientific conference. Vasculitis Ireland Awareness picked up that challenge, and Vasculitis International decided to help. A group was formed with patient advocates and young researchers from around the world, including the UK, Ireland, the Netherlands, Czech Republic, Malta and more. With their combined, collaborative efforts, a programme proposal was put together and a grant from EJP-RD (the European Joint Programme for Rare Diseases) was secured. Plans for translation services and talk shows at the end of each day of the scientific conference meant additional funding was needed and acquired from The Hospital Saturday Fund and Vifor Pharma.

“Ultimately, the conference was a fantastic proof of concept, as we managed to help Vasculitis Ireland Awareness to organise a huge event through collaborative efforts”

Peter’s highlights from the patient conference

Peter’s biggest highlight from the patient conference was the presentations given by individuals from the vasculitis patient community. “We first heard a patient story from a woman called Emma, followed by another called Jayne—a lady who lost her nose as a result of her ‘limited’ vasculitis diagnosis and now has an artificial nose”. The presentation gave a raw, honest insight into life with vasculitis and focused on the importance of early diagnosis to help improve quality of life.

Peter also highlights Professor Peter Merkel’s presentation, who spoke about advancing the clinical research related to vasculitis, while emphasising the importance, in the meantime, of doing a lot better in terms of the current treatments available and aiming to improve the community’s quality of life. “For me, that was quite an important statement.”

Looking to the future

In the short term, Peter is very much looking forward to World Vasculitis Day on 15 May 2022. The idea of celebrating World Vasculitis Day originally came from Professor Bernard Terrier from France. At RARE Revolution we are proud that the first World Vasculitis Day, in May 2020, launched with a special edition of RARE Revolution magazine dedicated to promoting the voice of the ANCA-associated vasculitis (AAV) global community. This year, Peter hopes to see vasculitis organisations around the world using their platforms to promote this special day and the vasculitis community using their voices to raise awareness of this group of diseases and to initiate conversations within families and in healthcare settings.

“We are beginning to be very active as an organisation, not only with organising the patient conference in Dublin, but also with projects like the FAIRVASC research project, which will link vasculitis registries across Europe into a single European dataset.”

Looking to the future of Vasculitis International, Peter’s priority is forming more relationships with vasculitis organisations from European countries and expanding this to include even more countries. During the conference in Dublin, it became clear that Joyce Kullman, president of the Vasculitis Foundation in the US, is also keen to join Vasculitis International.

To accelerate Vasculitis International’s plans, Peter hopes to recruit more volunteers and increase the volume of work being carried out. Peter also hopes to involve a strong support network of healthcare professionals with Vasculitis International and include their expertise as resources on the website.

Additionally, Vasculitis International is making plans to put together a roundtable discussion with individuals living with vasculitis to discuss their hopes and fears. Peter is pleased that vasculitis healthcare workers have recently been discussing the psychological and emotional effects of living with vasculitis, as well as the physical. “I think we need more interest in the emotional journey rather than just the medical journey when it comes to vasculitis,” Peter states.

Lastly, Peter wants to place emphasis on showcasing the accomplishments of Vasculitis International so far and highlighting what they are capable of achieving in the future, in order to attract more organisations to collaborate.

“I think it is really important that vasculitis organisations understand that we are not trying to take over anything—we simply want people to collaborate for the benefit of the global community and help improve the quality of life of vasculitis patients.”

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Disclaimer

The views and opinions expressed in this article are entirely those of the contributors and do not necessarily reflect the views and positions of Vifor Pharma.

UK-NA-2200077 / date of preparation : May 2022