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quality of life

Standards Of Care

The European Huntington’s Disease Network (EHDN) facilitate various working groups to encourage collaboration in  advancing treatment and care for Huntington’s Disease. The Standards of Care Working Group aims to develop evidence based guidelines for best practice. This working group is comprised of clinicians and allied health professionals from various disciplines, such as dietitians, dentists and speech and language therapists both from Europe and the USA. All contributed their wealth of expertise and knowledge gained through working with HD patients and their families.

This collection address fundamental aspects of the clinical management of Huntington’s disease (HD), focusing on non-therapeutic interventions in order to promote uniformity and standardisation of care internationally. Ultimately it aims to add to the current knowledge on management of HD and would allow practitioners to make informed decisions regarding best patient care.

Please follow the links below for open access to this series of articles which is kindly supported by CHDI Foundation:

A Standard of Care for HD - who, what and why

A Standard of care for HD - a patient and family perspective

Nutritional management of individuals with HD

Guidelines for oral healthcare of people with HD

Management of speech, language and communications difficulties for people with HD

Development of guidelines for occupational therapy in HD

Oral Feeding in HD a guideline document for speech and language therapists

Development of physiotherapy guidance and treatment based classifications for people with HD

Physiotherapy clinical guidelines for HD

Active HD

ACTIVE-HD, Huntington's Disease Centre, Cardiff University, Wales  works to promote exercise and activity in Huntington’s disease (HD) through research and collaboration.

Active HD Physical Therapy and Exercise Interventions for people with HD

I would urge careful planning, seeking treatment for both affected and unaffected family members and trying to avoid watching for symptoms too closely

Dr Niall Pender

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