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.

Organizations:

Year: 2018

Languages: English

Format: Document (article, report, guide, etc.), Infographic

Dimension(s) of caregiving:

Realities of caregiving
Repercussions of caregiving

Need help? →

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.

To speak to a caregiver counselor about a difficult situation, ask questions or get a referral, call l’Appui’s Caregiver Support Helpline.

Bilingual; open Monday to Friday from 8 a.m. to 6 p.m.

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