Knowledge platform

Since 2014, the Förderverein für Kinder mit seltenen Krankheiten has set itself the goal of continuously and sustainably promoting the transfer of knowledge on the topic of children and young people with rare diseases. The new digital knowledge platform was created on the initiative of Manuela Stier, founder and managing director of the Förderverein für Kinder mit seltenen Krankheiten. For the first time, affected families and specialists can access knowledge online that they previously had to laboriously gather
previously had to laboriously gather. They receive information on what they are entitled to, help and support services, and all this is easily accessible!

Access for all and easy to use
The digital knowledge platform was designed and implemented by the Förderverein für Kinder mit seltenen Krankheiten together with the Zurich University of Applied Sciences (ZHAW) Winterthur, the HES-SO Valais, numerous competent specialists and 810 affected KMSK families. After two years of development, the freely accessible platform has been online since November 2022. The knowledge platform is based on the experiences and needs of affected families and professionals and serves to help them master the organizational, administrative and financial challenges more efficiently.

There are 14 topic areas for this purpose

• The path to diagnosis
• Emotional stress and coping
• Exchange with affected families
• Relief, care and support
• Family and caregivers
• Insurance benefits, application and enforcement
• Financial support options
• Therapies and additional services
• Leisure and time out
• Daycare, kindergarten and school
• Reconciling family and career
• Adolescence and transition to adulthood
• Palliative care, preparation, farewell and mourning
• Behavior in emergencies

To ensure that the wealth of knowledge on the platform is constantly expanded, affected families and professionals are encouraged to add information using an update form.

Professionals can obtain information
Professionals often come up against their limits when it comes to rare diseases: they often have little or no experience of where affected families can access knowledge on their new journey through life, and at the same time they are confronted with desperate parents. With the digital KMSK knowledge platform, they now have a tool at hand that serves as a reference work on the one hand and that they can recommend to affected families on the other.

The dialog groups of the KMSK knowledge platform
Our dialogue groups are (newly) affected families, gynaecologists, midwives, paediatricians, family doctors, geneticists, neurologists, eye and ear specialists, therapists, doctors, psychologists and psychiatrists, (children's) hospitals, nurses, Spitex employees, health directors, politicians, researchers and trainees, patient organizations and teachers.

Integrated knowledge transfer - three communication measures are interlinked!
Knowledge transfer is guaranteed on a broad level by the Förderverein für Kinder mit seltenen Krankheiten, as the 5th KMSK knowledge book "Seltene Krankheiten - digitale Wissensplattform für Eltern und Fachpersonen" (Rare Diseases - digital knowledge platform for parents and specialists) was published in a print run of 11,000 copies and sent free of charge to the above-mentioned dialog groups on the basis of the KMSK knowledge platform. In it, affected KMSK families talk about their challenges in the 14 subject areas. In addition, 39 specialists were recruited to provide valuable knowledge on the individual topics in personal interviews.

The support association for children with rare diseases

We have been committed to helping affected children and young people and their families in Switzerland since 2014. We focus on the following areas:

• Direct financial aid for affected families (around CHF 3 million since 2014).
• Connecting affected families (more than 10,000 family members have taken part in free KMSK family events since 2014), Facebook KMSK self-help group (795 parents) and 835 families in the free KMSK family network.
• Knowledge transfer for affected families and professionals via 6 knowledge books on rare diseases and the digital KMSK knowledge platform (d,e,f,i)
• Presence in the media
  

The first two points are made possible by donations from private individuals, companies, business organizations and foundations. The third point is made possible thanks to long-standing partners and sponsors for whom it is important to make a lasting commitment to the families affected. We are grateful for the trust we receive from our wonderful families and our long-standing donors, patrons, partners and sponsors. www.kmsk.ch