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Around 350,000 children and young people in Switzerland are affected by a rare disease. This brings great challenges for the whole family: Parents who are on the edge of their power, siblings who fall short, financial worries and social isolation. To accompany these families on their way, the non-profit association for children with rare diseases „Förderverein für Kinder mit seltenen Krankheiten” was founded by Manuela Stier in 2014.

For many families affected, it is a real gauntlet: They often fight for years to get a diagnosis and access to effective therapies and aids and to have those costs covered. Again and again, they experience arbitrary decisions from the IV (disability insurance) and the health insurance company, stumble over administrative obstacles and get into financial difficulties through no fault of their own.

"With our daughter's illness, our entire life plan changed in one fell swoop. A daily hurdle race between doctor visits, therapies and Noémie's 24-hour care began. " Kerstin, mother of Noémie (disease: spina bifida)

Many are like Noémie's family – one parent has to give up his job and from now on has to look after the sick and the healthy children around the clock. Unexpected costs related to the sick child become an immense problem.

The support association for children with rare diseases helps here

The franc you donate will be used by the association for children with rare diseases to benefit affected families. For example, for special therapies that are not paid for by IV or health insurance, or for means of mobility that mean a piece of freedom for affected families.

Facts:

  •  Before the correct diagnosis is made, the parents of the affected children and young people had to see an average of seven different doctors.
  • 40 percent of children and young people receive at least one misdiagnosis.
  • On average, it takes five years for a rare disease to be diagnosed. Years that are marked by powerlessness, fear, loneliness, feelings of guilt and despair for affected families.
  • Whether there is a therapy for the rare disease? Unlikely. Because only five percent of the approximately 8,000 rare diseases worldwide can currently be treated, and three out of ten children die before the age of five.

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The stories of the affected families are similar, even if the respective rare diseases are very different. After an inconspicuous pregnancy and birth, the parents are happy about a supposedly healthy baby but then realize over time that their child is not developing according to its age.

The parents of the affected children and adolescents have already consulted many different doctors before the correct diagnosis was made. This often leads to administrative hurdles and financial challenges. Because where there is no diagnosis, it often becomes difficult with cost credits from the IV or health insurance company. Unexpected costs related to the sick child are an immense problem - here we can help together.

Help quickly and easily

You as a donor can help us because we will use the donations for affected families.

With this Copalana crowdfunding, 100 percent of your donations will benefit our 660 families. For example, we could finance Noémie an electric cargo bike and Leonie a bus suitable for her disability. Or we could finance a family like Noémie a family rehab in the aftercare clinic in Tannheim Germany, since there is no real family rehab clinic in Switzerland, where the affected child, the parents and the siblings can regain new energy. These costs are not covered by the IV because the clinic is in Germany. However, there is no corresponding offer with the same possibilities in Switzerland! Thanks to a benefactor, the Förderverein took over the costs.

Your donation will have a lasting effect!

Thanks to your donation, we can achieve even more and improve the quality of life for children and young people affected by a rare disease and their families in Switzerland.

We guarantee that your donation will be used responsibly and sustainably and that we always act in the interests of the affected families.

In 2021, thanks to generous donors, we were able to pay out CHF 360,000 to affected families for therapies, mobility, aids and other requests that are not covered by disability insurance or health insurance. In this way, we were able to make the often-difficult everyday life a little easier for many families.

Together we can achieve more!

In 2014, the non-profit association for children with rare diseases was founded by Manuela Stier. Since then, the association has continued to develop - always to the benefit of the affected families. Our work focuses on children and young people with rare diseases as well as their parents and siblings.

Sustainably improving their quality of life is important to us. We take away the feeling of loneliness by making them members of our free family network. In the meantime, we have been able to give 7,000 young and old guests a break at our family events. These carefree moments help parents to recharge their batteries and give their children wonderful moments of happiness.

660 families are already in our family network and 570 in the KMSK self-help group Switzerland on Facebook. A lively exchange of ideas and knowledge is therefore guaranteed. Knowing that there are so many families with similar worries is immensely valuable and reduces the burden of loneliness, says one mother.

One of our important goals is to impart knowledge about rare diseases. In close dialogue with affected families and professionals, knowledge is generated that is made accessible to parents, professionals, and the public. Because knowledge creates understanding.

So that we can continue to support these admirable and strong families, we depend on donors like you. We use your donation francs consciously and use them where they are most urgently needed and have a lasting effect.

Please share the link to the project and help expand the reach of this project.

Thank you from the bottom of our hearts for working with us to help children and young people with rare diseases in Switzerland.

Förderverein für Kinder mit seltenen Krankheiten (KMSK)

MANUELA STIER

Founder and managing director of the Förderverein für Kinder mit seltenen Krankheiten (KMSK)

manuela.stier@kmsk.ch

T +41 44 752 52 50

PROF. DR. MED. ANITA RAUCH

Präsidentin KMSK, Direktorin am Institut für Medizinische Genetik der Universität Zürich



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MANUELA STIER/Stier Communications AG
Förderverein für Kinder mit seltenen Krankheiten