Frequently asked questions

The Scleroderma Framed Foundation aims to help raise awareness of scleroderma among a wider audience, both nationally and internationally, as well as amongs family, friends, healthcare professionals and the general public.

Scleroderma Framed literally means "Scleroderma in a frame". But when you say it in Dutch, it sounds like ‘Scleroderma Vreemd’. This refers both to the unknown, strange nature of the condition and to what we do: raising awareness.

Between 2008 and 2011, the initiative to raise awareness of scleroderma grew from an idea into the touring exhibition "Scleroderma in Focus". In 2011, the Scleroderma Framed Foundation was established. An international name with a Dutch twist. So, in terms of content, there is no difference.

Jessica, the founder of Scleroderma Framed, has systemic scleroderma herself and often found that people did not know anything about the condition. This was true not only for those around her, but also for healthcare professionals. This is how the idea for a travelling photo exhibition came about.

We have now been able to portray people with various forms of scleroderma and are sharing these portraits with the world.

"Public awareness is at the cradle of scientific research" (2009 quote from a Scleroderma Framed volunteer).

We have made a deliberate choice to focus on raising awareness of scleroderma. In this way, we hope to contribute to existing research initiatives on scleroderma as well.

The English term awareness is used all over the world to educate the public on a topic and make it more widely known.

More awareness of scleroderma may mean better diagnosis by doctors and paramedics. Early diagnosis can make a big difference with respect to treatment and the quality of life of people living with it. 

Check out the news and follow us on social media for the latest exhibitions and activities organised by our Foundation.

The Scleroderma Framed foundation works with (unpaid) volunteers only, and draws on the expertise of professionals where necessary, such as in the creation of this website.

On average, 20 volunteers are involved in the activities of Scleroderma Framed. Most volunteers also have a paid job alongside their voluntary work. Volunteers contribute based on their skills and availability.

Please feel free to send us an email at info@sclerodermaframed.nl.

Hans-Peter van Velthoven (Markelo, 1965) is a famous pop music photographer. He has been travelling the world with his camera to take photographs of many pop artists, including Muse, Stereophonics and Bløf. Previously, Hans-Peter applied his raw, honest and recognisable style of photography in his work for commercial clients, including 3FM, AVRO, Alliander, Nuon Solar Team. Since 2008, he has also worked for the Scleroderma Framed Foundation. For more information, please refer to https://www.hp-ph.com.

Photographer Hans-Peter van Velthoven has been working for the Scleroderma Framed foundation as a volunteer and an external advisor. In these roles, he portrays people with scleroderma in his photographs. The shooting days are turned into full-blown photo shoots with the help of a make-up artist and some volunteers. The end result are portrait photos that focus on the individual’s character, not on scleroderma. The people in front of his lens are models.

Anyone who has a form of scleroderma is welcome to take part in our photo shoots. However, there is a high level of interest in participating in a Scleroderma Framed photo shoot. We are not always able to accommodate everyone who applies in the same year. Those who are not selected in a given year, will be the first to be contacted for the next year shoot.
Applications are handled in order of receipt. Nobody’s application will be rejected!

The date of the next photo shoot will always be announced on our website and through our social media channels.

Participating in a Scleroderma Framed photo shoot is free of charge.

The photographs are used to promote the foundation’s aims: to raise awareness of scleroderma in a positive and artistic way. The portraits are displayed at touring exhibitions, on social media, and at conferences and symposia.
The photographs taken are subject to portrait rights; all models need to sign a release form stating that the photographs can be used for this purpose.

Books can be ordered from our online shop or our exhibition stand.

Yes, we do indeed use Mollie for online payments.

You can make a donation by clicking the donate button at the bottom right of the website.

Donations and sponsorship money as well as the proceeds from the sale of our products, will be used to fund existing and new initiatives.

The foundation aims to be independent. Sponsors and donations are very welcome, provided they do not compromise the foundation’s autonomy. The foundation wishes to retain the freedom to decide for themselves what activities they will carry out and how they wish to do so.