“I have a rare disease. But together we are never alone.”
 “I like being unique that's why I have a rare disease.”
 “Rare,
but not lonely.”
 “It was confronting in a good way, good fun and you specifically saw the person...
in all their worth.”

Exhibitions

Since 2008 Hans Peter van Velthoven has portrayed a number of people with scleroderma in an artistic way. In the same period of time, Prof. dr. Frank van den Hoogen – director of the rheumatology centre of Radboud umc and sint maartenskliniek hospital - initiated a research study into the psychological effects of the photo shoot on the models' self image. The vast majority of models said that their self-image had changed for the better.

The photographs are beautiful pictures to look at, and offer an easy reason to talk about scleroderma and to give more information about it.
The travelling exhibition can be seen in various hospitals, at conferences and symposiums, both in The Netherlands and abroad.
If you are interested in the exhibition or a stand at your location, please send us an email: info@sclerodermaframed.com.

scleroderma

Scleroderma (systemic sclerosis) means ‘hard skin’. It is a very rare and serious rheumatic disease, characterized by an accumulation of connective tissue in the skin and internal organs.

As scleroderma tightens the skin on the face, people suffering from this disease will develop typical features.
Internal organs affected may include the lungs, heart, gastrointestinal tract and kidneys.
For more information about scleroderma, please refer to the NVLE, the Dutch patients' association for people with Scleroderma, Lupus, MCTD or APS.

www.nvle.org

Photobook

scleroderma framed € 42,50

(incl delivery costs) Order now  
Showing photographs of 11 models, the travelling exhibition ‘Scleroderma Framed’ was realized in 2009. The exhibition was expanded to include 54 models with scleroderma between 2010 and 2014.

The travelling exhibition can be visited in various hospitals, at conferences and symposiums, both in The Netherlands and abroad.

Please fill out the required information. Next, we will provide you with the payment method and an estimated delivery date.

* mandatory fields. A confirmation of your order will be sent to the email address provided with your order.

Events

24 mrt 2014 - 23 jun 2014
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Sint Maartenskliniek Woerden

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8 jan 2014
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
VUMC Amsterdam
Policlinic rheumatology, route M, 1st floor

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7 sep 2013
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Maxima medical centre, Eindhoven
Policlinic rheumatology

route  

25 mei 2013
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Atrium MC, Heerlen
Chapel

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1 sep 2012
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
ZGT, Hengelo
Dept. Rheumatology and clinical immunology

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12 mrt 2012
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
UMC, Utrecht
Policlinic rheumatology

route  

27 jun 2011
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
UMC, Groningen
Policlinic rheumatology

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1 feb 2011
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Albert Schweitzer Hospital, Dordrecht
Policlinic rheumatology

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9 nov 2010
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
ZGT, Almelo
Central corridors

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16 mrt 2010

Photo exhibition 'Scleroderma Framed'
Amphia hospital, Breda
Central corridor

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14 jan 2010
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Sint Maartens Hospital, Ubbergen
Rondeel

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5 okt 2009
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'
Radboud UMC, Nijmegen
Central corridor

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29 jun 2009
Opening Exhibition Scleroderma Framed

Opening photo exhibition 'Scleroderma Framed'
Sint Maartens Hospital, Ubbergen
Rondeel

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25 sep 2011
Presentation photobook 'Scleroderma Framed'

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5 feb 2013
Kick-off Scleroderma Framed Foundation







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6 feb 2014
3rd systemic sclerosis world congress

Scleroderma Framed is present with the informational stand and the president of our foundation will speak at 2 sessions

Time: 11.00 h route  

27 sep 2013
Cafe Scientifique - Canada

Scleroderma Framed presented the film and the informational stand at Cafe Scientifique 'the face of rare disorders' hosted by CIHR Institute of Genetics

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27 sep 2013
Scleroderma congress 2013 - Canada

Scleroderma Framed presented the film and the informational stand at the Scleroderma Congress Canada 2013


Title #29

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18 nov 2013
MUMC in co-oporation with the NVLE

During the week of chronic diseases, withe the theme 'informal care and volunteer work' the NVLE and Scleroderma Framed gave a presentation

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22 jun 2013
NVLE congress 2013

During the NVLE congress 2013 Scleroderma Framed presented the informational stand

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1 jul 2014 - 2 jul 2014
Appearance matters conference 2014


Exhibition 'Scleroderma Framed' at 6th 'Appareance matters conference'

Time: 09.00 h - 18.00 h route  

26 mei 2014 - 7 jul 2014
Photobook 'Scleroderma Framed' at The Readshop Malden

Time: 09.00 h - 18.00 h route  

14 okt 2014 - 14 okt 2014

Scleroderma Framed is present with the informational stand and the exhibition during the festivities for World Arthritis Day
 Show your support

Time: 10.00 h - 17.00 h route  

13 okt 2014 - 24 nov 2014
Exhibition Scleroderma Framed

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3 mrt 2015 - 16 apr 2015
Exhibition Scleroderma Framed

Photo exhibition 'Scleroderma Framed'  3 march - 16 april at Rivierenlandhospital Tiel

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7 mrt 2015 - 7 mrt 2015
Membercontactday NVLE

Scleroderma Framed is present, offering information.
7th of march - Albert Schweizerhospital Dordrecht.
Click here for the details.

Time: 13.00 h - 17.00 h route  

15 jun 2015 - 31 jul 2015
Exhibition Scleroderma Framed

Photo exhibition Scleroderma Framed from 15th of June till 31th of July in location Westeinde of MC Haaglanden The Hague. Open during working days from 8 till 17 h.

Time: 08.00 h - 17.00 h route  

3 aug 2015 - 10 sep 2015
Exhibition Scleroderma Framed

Photo exhibition Scleroderma Framed from 3th of August till  10th of September in location Anthoniushove of MC Haaglanden The Hague. Open during working days from 8 till 17 h.

Time: 08.00 h - 17.00 h route  

12 mrt 2016 - 12 mrt 2016
Meeting Day NVLE Erasmus

On Saturday 12th of March, Scleroderma Framed will be present with information stand during a NVLE meeting day in Erasmus MC Rotterdam. Click here for direct access to the event information on the website of nvle.

Time: 11.00 h route  

2 apr 2016 - 2 apr 2016
NVLE regional meeting Tiel

Stand of Scleroderma Framed is present at the NVLE regional meeting, location Tiel on saturday 2. April. Theme is 'tiredness'.  The invitation.

Time: 13.00 h - 16.30 h route  

17 mei 2016 - 17 nov 2016
Exhibition Scleroderma Framed

As of Tuesday, May 17th (part of) the exhibition 'Scleroderma Revealed' will be shown for half a year in the Outpatient Rheumatology & Clinical Immunology Maasstad hospital in Rotterdam.
The exhibition can be visited during opening hours of the clinic; 08.00 h-16.30 h.

Time: 08.00 h - 16.30 h route  

27 jun 2016 - 1 jul 2016
Exhibition EU Brussels

From monday 27. June till friday 1. July the exhibition "Sclerodermie in Beeld" is shown in the European Parliament Brussels. 

route  

8 okt 2016 - 8 okt 2016
Music for Scleroderma Framed

A great musical fundraising evening for Scleroderma Framed. Cooperation of Twice Dice. Click on the picture for more information and tickets.

Time: 20.00 h route  

3 sep 2016 - 11 sep 2016
New photoshoots

At 3, 4 and 11th of September new photoshoots of people with scleroderma will be made by our photographer Hans Peter van Velthoven. Location is St. Maartenskliniek.

Time: 01.00 h route  

5 jan 2017 - 5 jan 2017
Exhibition Scleroderma Framed

With 28 pictures the exhibition 'Scleroderma Revealed' will be shown till the 5th of January in the Outpatient Rheumatology of Sint Maartenskliniek in Ubbergen. The exhibition can be visited during opening hours of the clinic.

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4 jan 2017 - 4 jan 2017
Exhibition Dutch Ministry of Health

Until 4th of  January, 2017 our latest photo's of 2016 are exhibited in the entrance of De Resident of the Dutch Ministry of Health in The Hague. 

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The Scleroderma Framed Foundation appears regularly in various media:

Media

Spotted yesterday in the latest edition of Reumamagazine :two pages with Dutch models, Jessica and Linda, speaking enthusiastically about the NVLE, Fesca - Federation of European Scleroderma Associations and project ARCH. They obviously also spoke about Scleroderma Framed!
:

News

At 3, 4 and 11th of September new photoshoots of people with scleroderma will be made by our photographer Hans Peter van Velthoven. Location is St. Maartenskliniek. The new photo's keep the travelling exhibition alive and up-to-date.

activities of the Scleroderma Framed Foundation are supported by the following sponsors::

Corporate

CreaBea


Hands-on creation & communication




Visit website  

Hans Peter van Velthoven

Visit website  

Dielen flightcase bouw






Visit website  

Peterjan van der Burgh





Visit website  

HPPJ PHOTOGRAPHY & FILM



Visit website  

Cleanil schoonmaakproducten



Visit website  

Sint Maartenskliniek



Visit website  

NVLE



National foundation 
lupus, aps, sclerodermie en mctd

Visit website  

B.F. van Tienen Aannemersbedrijf B.V.



Visit website  

Aannemersbedrijf Herfkens BV

Visit website  
Donate here

 Donate to Scleroderma framed

By donating to the Scleroderma Framed Foundation you help people with this disease. The donations will be used to perform activities which contribute to the awareness of Scleroderma, achieving early diagnose and treatment.

 Your info & Donation

contact

 about scleroderma framed

The Scleroderma Framed Foundation is a young, dynamic foundation run by 17 enthusiastic and committed volunteers. Together, we would like to promote awareness among the general public, both nationally and internationally, as well as among family members, friends and acquaintances, professional health workers and even people not directly involved.

The Foundation's aim is to give scleroderma 'a face' and use various activities to reach this goal. While drawing attention to the disease in a positive and artistic way, the central focus is on the character of the people with scleroderma.

 contact

 P/a Leuthsestraat 13
 NL-6575 JD Persingen
 +31-6-28954455
 info@sclerodermaframed.com
KvK-nummer: 56502397

 scleroderma framed

The ’Scleroderma Framed‘ book of photographs
is available for
€ 37,50 (including delivery costs)
 share a tweet with us @scleroframed