HD Lighthouse Contributing Editor's Comment: The HDlighthouse will be covering new and recent efforts to establish standards and guidelines for good clinical care for Huntington's Disease.

This timely article from Australia recognizes that most patients with a rare disease will be seen by general practitioners and cites Huntington's as one example. Each of these diseases may be statistically uncommon; collectively however, it is very likely that general practitioners will have patients in their practice who have a rare disease.

Their recommendations for GPs are well taken. They are:

• Diagnose
• Attend to the whole patient
• Know the disease
• Empower the patient
• Support the family
• Advocate

Read the full original article here:
http://www.mja.com.au/public/issues/185_02_170706/kni10328_fm.html

-- Marsha L. Miller, Ph.D.
Posted to the HDL: 22 Aug 2006

The common problem of rare disease in general practice

Andrew W Knight and Timothy P Senior

Rare diseases affect 6%-10% of the population, which equates to about 1.2 million people in Australia having a rare disease. The United States, the European Union and many other nations have coordinated policies and patient advocacy groups for rare diseases as a group. Australia has enacted orphan drug legislation, but there is no coordinated approach either from government or from patient groups. General practitioners see rare diseases commonly, but their role for this group has not been adequately described. People with rare diseases and their families have similar experiences despite their different diagnoses. GPs are well placed to help with these problems. The development of a generic general practice strategy for these patients may improve their overall care. # # #

Source: The Medical Journal of Australia 2006 Jul 17;185(2):82-3.

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