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 THE SCLERODERMA FRAMED FOUNDATION

The Scleroderma Framed foundation’s mission is to help raising awareness of scleroderma among the general public, both nationally and internationally, among family members, friends, acquaintances, and health care professionals, and also among people who are not directly involved with the disease in any way.

Scleroderma Framed literally means “Scleroderma in a Frame”. But when you pronounce the name in Dutch, it sounds like “Scleroderma Vreemd” (or “Unfamiliar Scleroderma”), which refers to the fact that the public is rather ignorant of or unfamiliar with the disease. And it’s our mission to change this and to generate more awareness of the disease.

In the years from 2008 to 2011, the initiative to raise (more) awareness of scleroderma culminated in the touring exhibition titled “Scleroderma in Pictures”. In 2011 the Dutch Scleroderma Framed foundation was established: an international name with a Dutch twist. As to what they stand for, there are no differences between the two initiatives.

The person who initiated Scleroderma Framed has systemic scleroderma herself. In her daily life she experienced that people didn’t know what this disease meant. This held true for the people close to her, but also for health care professionals. Her intention to raise more awareness of scleroderma was given a boost when a model with localised scleroderma appeared at the first photo shoot.
The foundation has been able to take portrait photos of people with all different forms of scleroderma by now, and we are proud to show them to the world.  

“Awareness is the source of scientific research” (Scleroderma Framed volunteer in 2009).
We 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 term awareness is used on (social) media channels all over the world as a hashtag slogan to show how important it is to educate the public and to fight ignorance.

More awareness of scleroderma may mean better diagnosis by doctors and paramedics. Early diagnosis might make a big difference for the quality of life of those affected.
Link to press release 

Please have a look at our or follow our for the foundation’s latest exhibitions and activities.

Volunteers

The Scleroderma Framed foundation works with (unpaid) volunteers only.

Some 20 volunteers on average contribute to the activities of Scleroderma Framed. Most of these volunteers have paid jobs apart from these volunteering activities. Each volunteer contributes to the foundation based on their skills and abilities.

Models and photo shoots

Hans-Peter van Velthoven (Markelo, 1965) is a renowned 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 to work for corporate clients, including 3FM, AVRO, Alliander, Nuon Solar Team. Since 2008, he has also worked for the Scleroderma Framed foundation. For more information about his photography, please refer to: http://www.hanspeter.nl.

Photographer Hans Peter van Velthoven has been working for the Scleroderma Framed foundation as a volunteer and an external advisor. In this role, he portrays people with scleroderma in his photographs. The shooting days are turned into full photo shoots with the help of a make-up artist and a number of volunteers. The end result are portrait photos that focus on people’s character, instead of the scleroderma disease.

Every person with one form or another of scleroderma is welcome to participate in our photo shoots. Because many people would like to participate in these photo shoots, we are not always able to photograph everybody in the year in which they applied to participate. Those people whose portraits could not be taken in the year in which they applied, will be the first to be asked to participate in the next photo 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. 

Provided our financial funds are sufficient, we will organise photo shoots in Sint Maartenskliniek clinic in the Dutch town of Ubbergen (near Nijmegen) every two years.

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

The photos taken are protected by law; all of the models need to sign a claim stating that their portrait photos can be used for the goal of raising awareness of scleroderma by the Scleroderma Framed foundation. Before the actual photo shoot, each model has received a quitclaim, which they need to have accepted by the day of the photo shoot.

Placing orders

Books can be ordered through our webshop

Wristbands can be ordered through our webshop 

The T shirts are currently sold out. However, we still have a number of running shirts that you could borrow from us to use in running events or for sponsor activities.
You’ll be updated as soon as our T shirts can be bought again. 

Yes, we use Mollie as a service provider for online payments.

Making donations

You can make a donation through clicking the button on this website.
If you would you like to make a donation in another way, then feel free to contact us. 

The foundation tries to be self-supporting. Sponsors and donations are most welcome, provided they don’t interfere with the foundation’s autonomy. The foundation wants to determine for itself what activities it participates in and how it would like to do this. Sponsorship money will be used to be able to pay for new initiatives.

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