Rare Diseases, KMSK Knowledge Platform, www.kmsk.ch

Financial Support

In many affected families, one parent is no longer able to work because childcare and nursing responsibilities take up a lot of time.

Among other things, this has financial consequences - especially since the costs for therapies, aids, external care services, etc. of a sick child are often high and the financing is not always or not completely covered by the IV or health insurance. There are many possibilities for affected families to finance certain services in another way.

Information about the disclaimer

Important notes

Note 1: Seek legal advice first if funding for a particular service is denied by IV or health insurance

As a parent, before you explore other financial Before you, as a parent, look into other financial support options, get advice from a social Legal advice on what you are entitled to and how to proceed in the event of a negative decision negative decision should be taken. Since legal services sometimes come at a cost, social Social counseling centers can also be supportive with regard to legal questions and claims can be supportive. Social counseling centers sometimes work closely with legal With legal services and, depending on the financial situation/legal expenses insurance of the families of the families, they can refer to the right legal service. Also, some Children's hospitals offer free legal consultations with Procap, where parents can get an initial initial legal assessment of their questions free of charge. First, when all social security options have been exhausted, foundations, crowd funding, second-hand markets and the like should be considered be considered.

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Insurance Benefits, Application and enforcement

Note 2: Contact foundations, associations, church congregations, etc., if financial means from IV or health insurance are not effective or sufficient

Have no qualms about approaching foundations and associations (e.g. FoundationSwitzerland), if all social security options have already been exhausted Possibilities have been exhausted. And church congregations also offer uncomplicated financial support. There are contact points for many services (e.g. (e.g., aids, care, recreation) that assume specific costs or contribute or contribute proportionally.

Most foundations require an application with a budget Budget. It is important to clarify the financial situation, whether the family is is entitled to support. It should be noted that some foundations only accept applications from institutions and reject private applications private applications. It is therefore worthwhile to research and inquire accordingly and to and to involve the social counseling centers of the children's hospitals in the preparation when preparing the application.

Note 3: Try crowd funding if financial means from IV or health insurance do not take effect or are insufficient

The path via associations, foundations and the like is not always successful. successful. Be open to new ways of doing things. Do not be afraid to go public with your Public with your concerns and try "crowd funding" or appeals for donations or donation appeals. You will be surprised how many people People want to support your child. Charities can also be a way to raise Also, fundraising organizations can be a way to request funds for specific services. It's best to you get good advice beforehand, so that you know both the possibilities and the challenges as well as the challenges.

Note 4: Buy second hand, if financial means from IV or health insurance are not effective or sufficient

And of course it is e.g. straight within the range aids always recommended to consider also second hand articles and to research on Classified ad portals and on social media groups. Here it is also worthwhile to take a look at the German market, which is usually more Is usually more extensive and less expensive. And take a look, for example, at into our Facebook Groupthere is one or the other Second Hand offered or other families have valuable tips for you.

Note 5: IV card may be required for certain benefits

Persons who receive an IV pension or a helplessness allowance from the IV are entitled to an IV certificate. The IV office in the canton of the IV office of the canton of residence is responsible for issuing the IV certificate. I.e. a decree for medical measures is unfortunately not sufficient for the IV certificate. The IV certificate can be applied for if the IV office has not thought of issuing the to send the IV-card to the family at home.

Important questions - Financial support

What foundations, associations and organizations are there for families with a child with special needs when the financial resources from IV or health insurance are not sufficient?

There are for many services (e.g. aids, Care, leisure time) there are foundations, associations, organizations that assume specific Organizations that take over specific costs or contribute proportionally. For this purpose, each foundation and decides whether and to what extent it will provide support and to what extent it will provide support.

Other foundations and organizations provide support with the application for financial aid and third-party funds.

Below you will find a selection:

Aladdin Foundation

The Aladdin Foundation primarily finances its own activities through donations received Offers. However, applications for financial support can also be submitted which will enable a positive experience for the whole family, or to make daily life easier. The financial support amounts to a maximum of the most important criterion for the award is that the whole family benefits from it Family benefits from it.

Interesting links


Cystic Fibrosis Switzerland

Cystic Fibrosis Switzerland offers a social counseling for affected persons around the topic "Financial Support". In addition, there are various services that can be taken advantage of.

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Financial support

Support association for children with rare diseases

Medical treatments are not always covered, Therapies, medications and aids are not always covered by health insurance or the are covered. In these cases, the Association for the Promotion of Children with Rare Diseases fills the financial gap that arises for the affected families. Affected families have the possibility to submit a funding application. This will be examined by an independent committee. In case of a positive decision the support association helps quickly, uncomplicatedly and demonstrably beneficial.

Interesting links

Funding application

hiki - association help for brain injured children

The Hiki parent organization supports families with brain-injured children and adolescents Adolescents with financial contributions. These can relate to therapies and therapies and aids, if these are not covered by the IV, for example covered by the IV. The organization can also provide financial direct aid for the care of brain-injured children, who have to be looked after, occupied, nursed and cared for around the clock at home and cared for around the clock, the organization can provide direct financial assistance.


KidsKidneyCare Switzerland awards financial contributions for children with kidney disease and their Families financial contributions for the following areas, among others: Relief or recreation of the parents, dialysis camps, transport costs, tutoring for school, vacations, costs for dental care for dental care, painting and hippotherapy, accommodation for parents, loss of wages.

Interesting links


Children's Cancer Aid Switzerland

The affected Families receive direct, fast and unbureaucratic targeted support in various financial financial matters, also in addition to public assistance.

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Direct financial aid

Cancer League

Regarding financial support, the Krebsliga offers possibilities for reimbursement and access to medicines that have not (yet) been approved by the authorities in Switzerland approved by the authorities. In addition, the Cancer League sometimes provides financial support for Support for additional expenses due to illness.

Pro Infirmis

Pro Infirmis provides direct financial assistance for people with special needs (Financial Benefits for people with disabilities - FLB) with money from the federal fund as well as other funds. Benefits can be paid for aids and Eyeglasses, construction measures, contributions to relief, assistance and mobility, medical Medical or dental treatment, non-daily expenses such as relocation costs, rent deposits, etc, Rent deposits, etc.

Swiss Muscle Society

The Swiss Muscle Society provides assistance with applications for Insurance benefits and with financial applications to third-party agencies.

Interesting links

Support with application

Sun for disabled children

The purpose of the foundation is to provide financial support to families with disabled children to enable vacations, leisure and recreation.

Interesting links

Financial support

Cerebral Foundation

The Cerebral Foundation is committed to helping people with cerebral And offers financial support to families of children with a rare disease for rare disease financial support related to additional expenses for glasses Glasses, shoes, clothes, transport, aids, therapies, Recreational stays, relief and help at home, etc.

Interesting links

Offers of help

Think of me foundation

The Think of Me Foundation provides financial support to families of children with rare diseases so that they can afford vacation and leisure activities.

Interesting links

Financial support

Kifa Switzerland Foundation

With the Emergency aid, the Kifa Foundation tries to alleviate emergency situations, bridge families of children and adolescents with special needs With special needs for extraordinary purchases and unforeseen Care interventions. In addition, the foundation offers a Care allowance if the costs of financing Spitex services are not 100% covered are not 100% covered.

What is crowd funding and can crowd funding be a funding option for our family?

Crowd Funding means as much as swarm financing. The Basic idea is that a large number of small donors (the "swarm") jointly "swarm") jointly finance a project such as a certain treatment or therapy, which treatment or therapy that is not covered by the IV or health insurance health insurance. Via special crowd-funding platforms, basically any person can present their present their request and collect donations. However, it is advisable to seek to seek advice in advance regarding the possibilities and challenges involved and not to start an unplanned call for donations.

Below you will find our offer and a list of possible possible crowd-funding options.

Where can I get second hand tools?

Procap Classifieds

On the electronic exchange organized by Procap Switzerland, free classified ads can be placed for the following categories (but also partnership/friendship, assistance, service and miscellaneous) and miscellaneous) can be posted and searched for.

Interesting links


SAHB IV Depot & second hand market

The disability insurance depot for medical aids (IV depot) is managed on behalf of the Federal Social Insurance Office (FSIO). There, 1) high-quality second-hand aids are lent and sold, which enable Enable people with special needs to lead a self-determined life. In the workshops of the depots, the used equipment is overhauled and controlled Quality guidelines and are prepared for their next use prepared. In addition, 2) a second-hand market is available online around the clock and brokers privately financed second-hand aids for people with physical physical limitations, free of charge and without complications. The advertisements are checked by the SAHB within one working week and are then activated.

Other portals

On social media platforms, there are various parent groups of Children with rare diseases and special needs. Take a look at for example our KMSK Facebook groupwhere one or the other second hand items or other families have valuable tips for you ready for you. In addition, you can look out on Ebay classifieds, Ricardo and Co can be found.

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Exchange with affected families

Important questions - Benefits

What other benefits exist for children with rare diseases and their families in terms of mobility?

Car purchase, duty refund and exemption motor vehicle tax

Many vehicle importers grant discounts for the purchase of a new vehicle and upon presentation of proof of disability, many vehicle importers grant discounts for persons who who are unable to use public transport due to their disability. Various aid organizations (e.g. Pro Infirmis, Cerebral Foundation, Swiss Paraplegic Association) have agreed on fleet discounts with the manufacturers With the manufacturers. Therefore it is worthwhile to contact these Organizations before purchasing a vehicle. At certain conditions (e.g. related to assets and income), mobility-impaired Income), persons with limited mobility are exempt from the motor vehicle tax , if they are dependent on a motor vehicle. Applications for this are to be sent to the respective cantonal road traffic offices. In addition, depending on the Canton, there is also a waiver if a conversion of a new motor vehicle was financed by the was financed by the IV. In this case, you can ask the regional can be inquired. For disabled vehicles, a customs refund can also be applied for can be applied for. The claim for reimbursement of import duties for motor vehicles if the person with a disability a) receives contributions from the disability insurance Contributions to the maintenance or disability-related modification of the motor vehicle or Motor vehicle or b) receives a helplessness allowance via the disability insurance (refers only to minors).

Parking card for disabled parking

Parents who regularly need to transport their children with special needs, can obtain a parking permit for the specially equipped parking spaces for the specially equipped parking spaces for the disabled.

Further information and application forms can be found on the websites of the cantonal road traffic offices.

SBB benefits and accompanying card

For inexpensive Public transportation, there is an identification card for travelers with an with an impairment and their companion. There is also one for the blind and Visually impaired as well as the reduced general season ticket. The prerequisite is an official IV certificate and or a medical certificate.

Interesting links

SBB travel concessions

Other benefits with IV card

There are also some benefits in the areas of culture, sports and education However, these vary greatly from canton to canton. Holders of an official gray IV ID card receive benefits for admission to Admission to theaters, museums, swimming pools. In ski resorts it is In ski resorts, it is sometimes possible to obtain day tickets for the accompanying person free of charge.

What other recreational benefits are available for children with rare diseases and their families?

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Leisure and time out

What other benefits are available for children with rare diseases and their families?

Serafe Levy Exemption

With regard to radio and television fees, there are several Possibilities for people with special needs to get a reduction or an exemption from the Exemption from the fee. For example, recipients of annual Supplementary benefits from the federal government for AHV and IV are exempt from the Exemption from the tax for their household. The delivery of a copy of the of the legally binding confirmation of the supplementary benefits to SERAFE AG is considered as a request.

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Tax exemption

Tax remissions and deductions

In some In some cases, tax waivers are granted, but the cantonal tax authorities are responsible for reviewing such requests The cantonal tax authorities are responsible for reviewing such requests. Basically, the following are considered are considered to be entitled to a remission:

  • Supplementary benefits recipients in a home and with few assets
  • Welfare recipients with few assets

However, persons receiving IV pensions do not have a general Claim to tax relief. Tax deductions are possible under certain possible. For example, deductibles, premiums, transportation, non-mandatory Medicines, etc., that are not covered by any insurance can be declared as a deduction in the Declared as a deduction on the tax return. Those concerned should always follow the Instructions for the tax return.

Furthermore, there are also tax deductions for illness and accident costs as well as disability-related costs Accident costs and disability-related costs (circular no. 11). These can be deducted from income without deduction of a deductible. The prerequisite for this is that the taxpayer bears the costs him/herself and can and can prove this. Alternatively, recipients of helplessness allowances may alternatively deduct a lump sum.

Interesting technical articles from the KMSK knowledge books "Rare Diseases

5. Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals"

Florence Eugster and Karin Helbling, Ostschweizer Kinderspital St. Gallen:

Social counseling centers provide an overview of financial support options

Simon Grossenbacher, Support Association for Children with Rare Diseases: It takes a lot of initiative to get further financial support