FAQ

The Scleroderma Framed foundation aims to contribute to raising awareness of scleroderma among a broader audience, both nationally and internationally, including family, acquaintances, healthcare professionals, as well as the general public.

Scleroderma Framed literally means 'Scleroderma Framed'. However, when pronounced in Dutch, it sounds like 'Scleroderma Vreemd', which refers to the unknown, the strangeness of the condition, and what we are here for: to generate more awareness.

From 2008 to 2011, the initiative to raise awareness of scleroderma developed into the traveling exhibition 'Scleroderma in Focus'. In 2011, the Scleroderma Framed foundation was established—an international name with a Dutch touch. In terms of content, there is no difference.

The initiator of Scleroderma Framed has systemic scleroderma herself and experienced in daily life that people did not know what this condition entailed—not only in her surroundings but also among professionals. Her plan to raise awareness of scleroderma grew when, during the first photoshoot, a model with localized scleroderma signed up.

Since then, we have managed to portray all different forms of scleroderma and share this with the world.

"Bekendheid staat aan de wieg van wetenschappelijk onderzoek" (2009, vrijwilliger van Scleroderma Framed).

Wij hebben bewust gekozen voor het bekend maken van sclerodermie en dragen daardoor mogelijk bij aan de bestaande initiatieven voor onderzoek naar sclerodermie.

"Awareness is at the cradle of scientific research." (2009, volunteer of Scleroderma Framed)

We have deliberately chosen to raise awareness of scleroderma and may thereby contribute to existing initiatives for scleroderma research.

The more well-known scleroderma is, the better it is recognized by doctors and healthcare professionals. An early diagnosis can make a big difference in quality of life.

Check out the news and follow our social media for the latest exhibitions and activities of the foundation.

Scleroderma Framed works exclusively with volunteers.

On average, 20 volunteers work on the activities of Scleroderma Framed. Most volunteers also have a paid job alongside their voluntary work. Depending on their skills and availability, they contribute in various ways.

Feel free to send us an email. Our email address is info@sclerodermaframed.nl

Hans-Peter van Velthoven (Markelo, 1965) is a renowned pop photographer. He travels the world with his camera to photograph pop artists such as Muse, Stereophonics, and Bløf. Hans-Peter’s raw, honest, and recognizable photographic style has previously been applied for clients including 3FM, AVRO, Alliander, Nuon Solar Team, and since 2008 also for the Scleroderma Framed foundation. For more information: www.hanspeter.nl.

Photographer Hans-Peter van Velthoven, as a volunteer and external advisor for Scleroderma Framed, captures people with scleroderma on camera. Together with the makeup artist and shoot volunteers, we create a full-fledged photoshoot day in which the character is central, not the scleroderma.

Everyone with a form of scleroderma is welcome to participate in our photoshoots. The popularity of joining a Scleroderma Framed photoshoot is high, so we cannot always schedule everyone who registers. Those who are not scheduled in one year are given priority for the next photoshoot.
Registration is handled on a first-come, first-served basis; we do not turn anyone away.
Upcoming photoshoots are always announced via our website and social media channels.

Depending on financial resources, we hold photoshoots every other year at the Sint Maartenskliniek in Ubbergen near Nijmegen.

Participating in a Scleroderma Framed photoshoot is free of charge.

The photos are subject to portrait rights. All models sign a quit claim stating that the photos may be used by Stichting Scleroderma Framed to raise awareness of scleroderma. Before the photoshoot takes place, each model receives this quit claim and must submit it on the day of the photoshoot.

The book can be ordered from our online store.

We do indeed use Mollie for online payments.

You can donate by clicking the blue donate button at the bottom right of the website.

The foundation aims to be self-sufficient. Sponsors and donations are very welcome, as long as they do not compromise the foundation’s autonomy. The foundation wants to retain control over which activities it carries out and how they are conducted.

Donations and sponsorship funds, as well as proceeds from the sale of our products, will be used to finance new initiatives.
Donaties en sponsorgeld, maar ook de opbrengst uit de verkoop van ons producten, zal gebruikt worden om nieuwe initiatieven te bekostigen.