Therapie und Mobilität für Kinder mit seltenen Krankheiten
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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.
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.
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