|Rare Diseases Summit , 27-28 March, Australia|
A National Plan for Rare Diseases - Driving Collaboration, Driving Action
The Rare Disease Summit 2015 aims to showcase current initiatives to progress a National Plan
for Rare Diseases.
The principal goal of a National Plan is to drive coordinated and collaborative action among stakeholders
to address important, common needs and concerns of people living with a rare disease.
The focus is people's experience of the health care system across Australia. The desire is for more equitable access to appropriate services, and to narrow the gap between how people with a rare disease experience the health system compared to people who also experience complex but more common health conditions.
Four focus areas of theRare Disease Summit include:
- Current Initiatives to progress a National Plan for Rare Diseases
- Data Collection and Use
- Models of Health Care
- Diagnostics, therapeutics, & Clinical Trials
Over two days, attendees of the Summit will listen to and engage with experts in these four focus areas of Rare Diseases. Interested delegates will include Clinicians, Researchers, Industry Executives, Health System Planners, Health Policy makers, and Leaders of Patient Organisations.
Sponsors of the Rare Disease Summit
Rare Disease Summit - Committee Members
Cameron Milliner (Shire), Shelley Evans (Genzyme), Prof. Jack Goldblatt (Genetic Services - WA), Prof. Jeff Szer (Melbourne Health),
Nicole Millis (MPS & Related Diseases Society), Jenny Sturrock (PNH Support Assoc. Aust.), Megan Fookes (Rare Voices Australia),
Rebecca Novacek (Rare Voices Australia), Lisa Adams (Independent Facilitator)
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