Clinicians Resource Pack - Rare Diseases Resource Pack

1) Workshop Program

2) Papers

• Rare childhood diseases: how should we respond?
• Call for a national plan for rare diseases
• The common problem of rare diseases in general practice

 3) Presentation summaries

• Rare respiratory diseases in children - impact on health professionals and health services
• Into the unknown - living with chILD - our journey with Sarah
• Zebras on the common? Rare diseases in general practice
• Helping families affected by rare diseases
• Benefits of multidisciplinary clinics for rare diseases
• The Association of Genetic Support of Australasia, Inc
• SNUG camps for children affected by rare diseases: A dose of respite

Useful links

• Special Needs Unlimited Group - general information
• Special Needs Unlimited Group - referral form
• Bladder Exstrophy Epispadias Cloacal Exstrophy Hypospadias Australian Community (BEECHAC)
• Steve Waugh Foundation Australia
• SMILE Foundation  (2014 note: Variety Australia has adopted The Smile Foundation as part of their programs)
• The Association of Genetics Support of Australasia. Inc
• EURORDIS
• NORD
• Orphanet