Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases

From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): Experiences of people with ALS/MND and family carers – a qualitative study

(2011) Mary R. O'Brien et al.   Amyotrophic Lateral Sclerosis

Awakening Australia to Rare Diseases: Symposium report and preliminary outcomes

(2011) Hugh JS Dawkins et al.   Orphanet Journal of Rare Diseases

What are the current barriers to effective cancer care coordination? A qualitative study

(2010) Jennifer Walsh et al.   BMC HEALTH SERVICES RESEARCH

Care for patients with ultra-rare disorders

(2010) Raoul CM. Hennekam   European Journal of Medical Genetics

Huntington disease: families’ experiences of healthcare services

(2010) Heather Skirton et al.   JOURNAL OF ADVANCED NURSING

Rare childhood diseases: how should we respond?

(2008) Y Zurynski et al.   ARCHIVES OF DISEASE IN CHILDHOOD

Developing a national collaborative study system for rare genetic diseases

(2008) Michael S Watson et al.   GENETICS IN MEDICINE

Why rare diseases are an important medical and social issue

(2008) Arrigo Schieppati et al.   LANCET

Clinical research for rare disease: Opportunities, challenges, and solutions

(2008) Robert C. Griggs et al.   MOLECULAR GENETICS AND METABOLISM