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Publications
In an effort to expand our services to HD families, and to the general public, we have made the following publications available in a downloadable format. If you would like to order a hard copy of any of the booklets below, send an email to info@huntingtonsociety.ca.The Huntington Society is a charitable organization dependent on public support. A donation of any amount to the Society would help us to continue to make publications such as the ones listed here available to the public. Please click on the Make a Donation box on this page.
Booklets
A Physician's Guide to the Management of Huntington Disease
A Caregiver's Handbook for Advanced-Stage Huntington Disease
Understanding Behaviour in Huntington Disease
Understanding Huntington Disease: A Resource for Families
Personal Perspectives on Genetic Testing
Living Life to the Fullest: Families Share their Ideas- A resource of strategies for caring for an individual with Huntington'sFact Sheets
Fact Sheets for Healthcare Professionals:
Managing Behaviour in Huntington Disease
Improving Communication in Huntington Disease
Diet in Huntington Disease
Palliative Care for Individuals in Late-Stage Huntington Disease
End-of-Life Issues in Huntington Disease
Exercise for People Living with Huntington Disease
Assessing Physiotherapy Needs of People Living with Huntington Disease
Physiotherapy Outcome Measures in Huntington Disease
Minimizing Risk in Huntington Disease
Behavioural Changes
Strategies to Enhance Communication
Publications from Other Organizations
The EHDN’s Standards of Care Working Group has put together a series of papers describing different facets of clinical care for HD patients, these have just been published as a Special Report in Neurodegenerative Disease Management. This is the most comprehensive effort so far to document best practice in the clinical management of HD. Thank you to CHDI Foundation for sponsoring the Open Access to this series making this information free for anyone to download, including patients and families.
Special Focus: A standard of care for Huntington's disease - Foreword
Editorial: A standard of Care for Huntington's disease: a patient and family perspective
Development of physiotherapy guidance and treatment-based classicfications for people with Huntington's disease
Physiotherapy clinical guidelines for Huntington's disease
Nutritional management of individuals with Huntington's disease: nutritional guidelines
Oral feeding in Huntington’s disease: a guideline document for speech and language therapists
Guideline for oral healthcare of adults with Huntington’s disease
Management of speech, language and communication difficulties in Huntington’s disease
Development of guidelines for occupational therapy in Huntington’s disease
Frequently Asked Questions about Huntington's Disease - from the European Huntington's Disease Network