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Children´s rights and children´s medicine

Children with rare diseases are suffering severely. We must make it easier for them - it is their (children's) right!

Children with rare diseases have a hard time: Often the diagnosis itself is a problem, since the causes of their suffering have never been researched. Years of odysseies through doctor's offices, emergency rooms and hospitals are most common. For many rare diseases there are also no medications available (yet). The affected children and their families often spend a lot of time in clinics and their everyday lives are marked by costly treatments.

On top of that  further difficulties arise from other directions: German university children's hospitals are in acute financial distress. They are the most important contact points for children with rare diseases - however, the costs resulting from the treatment of these children are often only partially reimbursed due to the current flat rates per case and are therefore borne by the clinics (background information: www.ichbinkeinefallpauschale.de). Under economic criteria, this is a high-loss business for the children's hospitals, which leads to massive cuts in the hospitals' budgets in an increasingly profit-oriented medical system - to the chagrin of the sick children and their families.

Thus, in addition to the difficulties of the disease itself, children with rare diseases are increasingly disadvantaged by the current health care system.

The UN Convention on the Rights of the Child

Against this background, the Care-for-Rare Foundation would like to draw attention to the fact that, under the UN Convention on the Rights of the Child, children have a right to "the highest attainable standard of health" (Article 24). 30 years ago, on 20.11.1989, the United Nations adopted the Convention on the Rights of the Child. All countries in the world ratified the document (with the exception of the USA). The CRC is the first binding document under international law that grants civil rights to children.

The pivotal point for our commitment is Article 3:

"In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration."

The structures of the German health care system do not sufficiently fulfil this obligation. Until this will have happened, the Care-for-Rare Foundation will take various steps to ensure that the issue of "children's rights in children's medicine" receives more attention.

Our commitment


Your help

Support the work of the Care-for-Rare Foundation for the rights of children with rare diseases with a donation to the account of the Sparkasse Ulm under the keyword "Children's medicine and children's rights".

IBAN: DE93 6305 0000 0000 0035 0035 33

Thank you so much!

Ihr Ansprechpartner:

Dr. Albrecht Matthaei

Tel: + 49 89 4400-57982
Fax: +49 89 4400-57702