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Parents are outraged. The Orphanhealthcare Foundation used the picture of her seriously ill child without being asked.
The action was well intentioned: the donations are intended to support children with rare diseases. But parents are upset. On a call for donations, they discover a photo of their seriously ill child. She was never asked whether the picture could be used for the begging letter. “We have had humiliating experiences that hurt us deeply. Our child was abused for advertising purposes,” says a father. The mother is also upset: “You should be able to see this picture and then decide whether you want it in this form – or not.”
Not an isolated case: “Kassensturz” had access to the files of other families. Including contracts that were presented to them. It says: “The holder of parental authority agrees on behalf of the child that Orphanhealthcare produces audio-visual material of the child (…) and this audio-visual material can be used within the framework of the foundation purpose of Orphanhealthcare without any time and spatial restrictions.”
Dominique Jakob, head of the Center for Foundation Law at the University of Zurich, is skeptical: “If a child is portrayed in an awkward situation in order to go public with it, then theoretically there must be consent for each picture, which is so specific is that it is real consent, which then also holds in terms of personal rights.”
Orpheanhealthcare says the contracts have been found legal and appropriate by specialist lawyers. And: Appeals for donations require pictures of those in need, otherwise nobody would donate.
The call for donations contained several statements that aroused sympathy when read, but never corresponded to reality.
One of the affected families criticized that Orphanhealthcare simply continued to use photos of their child for advertising purposes, despite an express written request not to do so anymore. The family’s lawyer writes that the call for donations contained several statements “which probably aroused sympathy when read, but never corresponded to reality”. It is said that the child has “difficulty breathing and swallowing”. That is incorrect.
The foundation says the child has been to events on a number of occasions and apparently had trouble swallowing. Regarding the accusation that the images were used despite an express request not to do so, the foundation says it still owns the rights to the images. These would no longer be used.
Angry parents have contacted Manuela Stier from the “Friends of Children with Rare Diseases”, which supports affected families: “We ask with every mailing. We would never use an image that a family didn’t say yes to.” Manuela
Stier also criticizes fundraising contracts presented to families: “20 percent to the families and 80 percent to orphan healthcare, I find it incomprehensible that a family foundation can put something like this on the table.” In fact, the contracts say: “The holder of parental authority is entitled to 20% of the (…) collected donations, but no more than the amount of the fundraising goal.” Orpheanhealthcare does not comment on the donation clause and says Ms. Stier is a co-founder of a competing charity.
Disappointed parents are left behind: “It seems to me that our child has been degraded and his fatal illness has been used to collect money.”