Rare diseases Day Australia
Go their website to learn more about any of the items below.
In the September issue:
- National Rare Diseases Plan
- Life Saving Drugs Program (LSDP) Post Market Review
- RVA and Pharmaceutical Industry 3rd Round Table Meeting 26th August 2013
- ‘Don’t Stop Research on Rare Diseases’ – an International Campaign
- Western Australian Supporters Living With A Rare Genetic Condition – GSCWA
- The Forgotten Ones Project
- Research News – Congratulations Professors Steve Wilton and Sue Fletcher!
- Rare Disease Mouse Models Available From The Australian Phenomics Facility
- RVA Australian Experiences in Living With A Rare Disease
- RVA and NZORD Strategic Partnership MOU
- NHMRC joins IRDiRC.
In the November issue:
- National Rare Diseases Plan – AHMAC Decision
- National Plans for Rare Disease in Europe
- RVA and CORD Partnership
- IRDiRC Research News
- RVA Office – introducing Amy!
- Survey to Register Interest – Rare Disease Symposium 2015
- International Rare Diseases Day
Upcoming Events – 2014 Rare Disease Day Events!
If you have an event you would like to upload to RVA E News please prepare no more than half-one page and email to firstname.lastname@example.org FEBRUARY Rare Disease Day Events
If you have an event you would like to share with RVA supporters, please email us at email@example.com Please submit your information by email and listing information such as; Name of event, date, time, venue, organiser and organisation name, email and phone contact and link to the organisation’s website.
Canberra – Parliament House
RVA will be repeating its Parliamentary event in 2014 inviting Senators and Ministers to learn more about the needs of the 6-8% of Australian population affected by rare diseases.
Queensland – Wesley Hospital
RVA is pleased to announce we will coming to Queensland for Rare Disease Day on Friday 28th February 2014. We would love to see as many of the rare disease community as possible attend this event.
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