Easy readers for adults

Some rare diseases include cognitive disabilities. People with rare diseases often need a lot of knowledge themselves about their disabilities. They must often describe their needs to various professionals in order to get access to correct treatment and society service.

Very often knowledge among professionals is scarce. For people with cognitive impairments it can be difficult to find correct and easily comprehensible information. Therefore Ågrenska has produced easy readers for adults about rare diagnosis 

  • Williams syndrome
  • 22q11 deletion syndrome
  • Neurofibromatosis
  • Klinefelter syndrome
  • Noonan syndrome

The production was financed by the Swedish Inheritance Fund.

Nedan ska man klickas till.

The informed patient

Jan Engström, journalist/editor, Gunilla Jaeger, MA, licensed psychologist AnnCatrin Röjvik, special educator

  • adapted, correct and accessible information about rare diseases
  • for people with rare diseases including cognitive disabilities

Aim

Enable people with cognitive disabilities to make informed decisions concerning
their life, in order to get access to the right care and services.

Project goal

Produce adapted, correct and accessible information on:

  • Williams syndrome
  • 22q11 deletion syndrome
  • Neurofibromatosis
  • Klinefelter syndrome
  •  Noonan syndrome

rare diseases of which Ågrenska, Sweden, has carried out family and adult programs.

Methods

Rewrite texts of existing information material into easily comprehensible texts.
Add visual and auditory material e g pictures and sound for further clarification.
Consult medical professionals for checking of facts.
Involve representatives of the diagnoses to test and comment on contents, intelligibility and layout throughout the process.

Easy reader

Williams syndrome, pdf opens in a new window

Klinefelter syndrome, pdf, opens in a new window

Noonan syndrome, pdf opens in a new window

22q11-deletion syndrome, pdf opens in a new window

Neurofibromatosis, type 1, pdf opens in a new window

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