Rare Disease Caregiving in America

This report (87 pages) presents the results of a survey on the experiences of caregivers supporting a child or adult with a rare disease or condition.

Year: 2018
Languages: English
Format: Document (article, report, guide, etc.), Infographic
Dimension(s) of caregiving:
  • Realities of caregiving
  • Repercussions of caregiving

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CALL 811 (Info-Santé/Info-Social). If you need support or have concerns or questions about your health or that of a family member or friend, call 811 to speak to a nurse or psychosocial worker. Bilingual and available 24 hours a day, 7 days a week, it’s free and confidential.

Si vous souhaitez parler à un⋅e professionnel⋅le spécialisé⋅e en proche aidance en lien avec une situation difficile, obtenir des références ou pour poser des questions, contactez le service Info-Aidant de l’Appui.

Ouvert du lundi au vendredi de 8h à 18h.

1 855 852-7784

[email protected]

www.lappui.org

To find community resources offering caregiving information and support near you, consult l’Appui’s Resource Directory or Proche aidance Québec's list of member organizations (in French only).

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This report This report (87 pages) presents the results of a survey on the experiences of caregivers supporting a child or adult with a rare disease or condition. Topics covered include caregiver demographics, information sources, use of local services, and the impact of the role on caregiver stress, wellness and other aspects of life.

The report draws on quantitative data from 1,406 caregivers aged 18 and over who reported providing unpaid support in the past year to someone with a rare disease. The data were collected online in fall 2017.

An infographic summarizing certain findings is also available. 

Read the report
See the infographic
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