Rare Care World's website brings together information about rare conditions such as Schwachman Diamond Syndrome (SDS) to provide people with a rare condition worldwide, their families and others the same information. For this purpose, the ICF coding established by the WHO (World Health Organisation) is used.

We intend to ensure that people with a rare condition in the Netherlands, and in principle in any country developing a personal health record, can fill out a form within their own PGO (personal health environment) about a number of activities with which they have problems in accordance with the ICF coding. The form you are reading now is an example, in this case for people with SDS.

The form is built the same way as using the ICF as is done through the website of the WHO , but is rewritten for someone with SDS in the Netherlands, who can fill out a form him/herself, with or without help from others. Moreover there is extra explanation at each activity.

The different activities have been numbered as used in the ICF. people with a condition other than SDS may have the same problems. The aim is to develop similar forms for them with the same numbering and description. In order to make it clear that the person concerned will fill out the form himself, the sentence about this will return in each item.

Do you have questions about the form? Please contact Rare Care World at info@rarecare.world

• More information about the International Classification of Functioning, Disability and Health can be found at
• • https://www.rarecare.world
  • https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health
• The Dutch summary can be found at https://www.rivm.nl/media/WHO-FIC/ICFwebuitgave.pdf
• The Dutch text has been simplified for both the website and the form. However, the full text is always included on the website under the heading ‘Omschrijving door de WHO’ ('Description by the WHO')

July 21, 2021