Course stays abroad for children with rare congenital conditions

Helfo can reimburse expenses for attending courses or meetings abroad for children with rare congenital conditions. This applies in cases where there is no resource centre or specialist community with experience of the diagnosis/condition concerned in Norway. If the service is available in Norway, this service must be used. Helfo can also cover expenses for persons over the age of 18.

1

Your rights

The child must have rare congenital condition in order to have their essential expenses for courses or meetings abroad covered.

This means that there must be fewer than 2,500 people in Norway with the condition. Find out more about rare medical conditions here (in Norwegian).

Helfo can reimburse expenses for courses/meetings when the purpose is for the parents/guardians to learn more about how the child with the rare condition must be treated in their everyday lives, and to give the family and child a chance to meet other people in the same situation. The medical programme must be documented to Helfo when you apply for reimbursement.

It is a condition for reimbursement that the child is part of the travel.

You must have a written statement from a resource centre or hospital in Norway documenting that no courses are available for the rare diagnosis/condition in Norway or any other Nordic country. 

You must also have a medical certificate documenting the child’s congenital condition.

Example

Pia is ten years old and has Marshall-Smith syndrome. Her parents need to learn more about her condition. They obtain a medical statement from Pia’s GP which documents her condition. The resource centre also documents that no courses are available for Pia’s condition in either Norway or any other Nordic country.

2

You must find a treatment centre yourself

Helfo does not have a list of course providers. You must find a course abroad and present this information to Helfo.

The information must state the following:

  • the course you wish to attend
  • the course programme
  • the cost of the course

The application will be assessed individually. The courses that are relevant for you will depend on the child’s condition.

Example

Pia’s parents find a course in Belgium which can help them to better meet Pia's needs.

3

What expenses can you/they have covered?

Amongst other things, Helfo can cover participant fees and essential travel and accommodation/subsistence expenses.

Helfo can cover essential expenses for:

  • travel and accommodation
  • participant fees
  • subsistence based on receipts (or at the applicable rates if expenses cannot be documented through receipts)
  • visas (not passports/electronic passports)

Your expenses for courses/meetings which have been covered previously will only be covered if the child’s life situation has changed. An example of a change in life situation is the transition from child to adult or new research which makes it important to acquire new knowledge.

Example

Pia’s parents find out that they can have their expenses for travel and accommodation, participant fees and subsistence covered.

4

Who can have their expenses covered?

Amongst other things, Helfo can cover expenses for children with rare congenital conditions, and their parents and siblings.

Helfo can cover expenses for the following:

  • Children with rare congenital conditions.
  • Parents/guardians of children with rare congenital conditions.
  • Siblings, if there is a programme or service for siblings at the course centre.
  • An escort, if other parents must accompany the child in addition to the parents.
  • More than one escort when a doctor has declared this to be necessary. You must obtain this declaration for each trip.
  • An assistant may be an appropriate escort when they are involved in the daily provision of support, if it is necessary for the assistant to participate in order to complete the course/meeting. Helfo does not cover expenses for an assistant who will attend the course solely to receive essential training in order to follow up the day-to-day training after the course.

Example

Pia and his parents can have their expenses for the course stay covered. In addition, the family can also have their expenses for Pia’s older brother covered, as provision is made for siblings at the course centre. Pia does not need any other escorts.

5

You can apply for an advance payment and/or prior authorisation only

You can apply for an advance payment to cover your expenses in connection with the course. Alternatively, you can apply for prior authorisation only.

If you wish to apply for an advance or prior authorisation only, it is important that you do this well in advance of the trip. It normally takes at least five weeks to process cases.

You must notify Helfo if you have received an advance payment but are unable to travel after all. You will then have to repay the advance.

If you do not wish to receive an advance payment, you can still apply for prior authorisation of reimbursement of your expenses only. You must then pay your expenses and submit an application for reimbursement to Helfo afterwards. 

Once Helfo has processed your application, you will receive a decision.

Example

Pia’s parents obtain documentation of what the travel and stay cost.

6

Remember documentation!

The documentation you will need to obtain is listed below.

You will need the following documentation:

  • written statement from a resource centre or hospital in Norway documenting that no courses are available for the rare diagnosis/condition in Norway or any other Nordic country
  • medical certificate documenting the child’s congenital condition
  • information about the course, documentation of the medical programme and course costs
  • alternatively, a declaration that more than one escort will need to accompany the child (you will need a new declaration for each journey)

In addition, you will also need:

  • documentation of your anticipated essential expenses if you are applying for prior authorisation or an advance payment
  • itemised receipts for expenses when you are applying for reimbursement

Example

Pia's parents make sure to get the documentation they need.

7

Submit your application digitally

You must submit your application to Helfo by no later than 30 June in the year after that in which the course/meeting took place.

Log in to Helfo's digital form

Log in to Helfo's digital form and apply for advance payment, prior authorisation or a refund of expenses (only in Norwegian).

 

For details of the documentation requirements, see "Remember documentation!"

Once your application has been processed by Helfo, you will be sent a decision. 

Paper form

If you are applying for reimbursement and are unable to use the digital form, you can apply by sending the following form:

together with the necessary documentation to: Helfo, Postboks 2415, 3104 Tønsberg.

It can be a good idea to make a copy of your original receipts before you send them to Helfo. 

If you are applying for an advance payment or alternatively prior authorisation only, send the statements to Helfo. You do not need to use a specific form for this.

Example

Pia’s parents decide to apply for an advance payment. They submit the digital form together with the necessary documentation.

Guidance Helsenorge

If you have any questions, please call Guidance Helsenorge: +47 23 32 70 00

Content provided by Helfo

Helfo. Course stays abroad for children with rare congenital conditions. [Internet]. Oslo: The Norwegian Directorate of Health; updated Friday, February 4, 2022 [retrieved Sunday, December 15, 2024]. Available from: https://www.helsenorge.no/en/refusjon-og-stotteordninger/kursopphold-og-rehabilitering/course-stays-abroad-for-children-with-rare-congenital-conditions/

Last updated Friday, February 4, 2022