Dialog Box

Loading...

Rare Disease Summit Communique

The Rare Voices Australia Rare Disease Summit (27-28 March) reviewed a Draft Communique which lists the key principles and objectives of a National Rare Disease Plan.  

 

RVA invites every organisation to formally endorse the Communique.

 

CLICK HERE to view the Communique.

The signed Communique will feature the logos of ALL those organisations that formally endorse the National Rare Disease Plan. This will be used to support RVA to advocate for a National Rare Disease PlanThe RVA Rare Disease Summit was informed by key findings from RVA’s 2014 National Roadshow on rare diseases. The “RVA National Roadshow Summary” document outlines these findings, and the principles and objectives to progress a national plan for rare diseases.  Please CLICK HERE to download.

 

The signed Communique will feature the logos of ALL those organisations that formally endorse the National Rare Disease Plan. This will be used to support RVA to advocate for a National Rare Disease Plan. 

 

 

Please complete the below form to register your support. 

 

 

Communique Support Form

Thank You

Your communique has been recieved.

Please indicate whether you are sending a communique as an individual, or if you represent and organisation

 

See below those individuals and organisations whom have already shown their support for the Communique. 

 

 

Communique Supporters List Signatures

Organisations

Individuals

Gaucher Association Australia
Cystic Fibrosis NSW
Duchenne Foundation
MDDA
Sanfilippo Children's Foundation
The Sydney Children's Hospital Network
Multiple Sclerosis Limited (MS)
Janssen
A.Menarini Pty Ltd
MPS Australia
HCU Network Australia
AMDF
UNSW
Genetic and Rare Disease Network
Parenteral Nutrition Down Under (PNDU)
HAE Australasia
Insititute of Molecular Biology, UQ
Dept. of Medical Genetics, University of Sydney
PKU Association of NSW Inc
ECD Global Alliance
Hypersomnolence Australia
Shine for Thomas Foundation Inc.
Self Help Queensland
APSU
AWCH
ausEE Inc
Immune Deficiencies Foundation Australia
BioMarin
Fabry Support Group Australia
Genzyme
PNHSAA - PNH Support Association Australia Inc
Australian Pompe Association
Foundation for Angelman Syndrome Therapeutics Australia Pty Ltd
Syndromes Without A Name (SWAN) Australia
Australian Cystinosis Support Group
Dystrophic Epidermolysis Bullosa Research Association Australia
Genetic and Rare Disease Network
Tarlov Cyst Society of Australia
Gelastic Seizure Support Hub
Pallister-Hall Syndrome (PHS) Support Hub
Cairns Ehlers-Danlos Support Group
Cystic Fibrosis Tasmania
Carers Qld
Cystic Fibrosis ACT
Raynaud's Phenomenon/Disease/Syndrome Facebook Group
MdDS Australia
Tuberous Sclerosis Australia
COWDEN'S SYNDROME -AUSTRALIA
COWDEN'S SYNDROME -AUSTRALIA (FACEBOOK GROUP)
Australian Addison's Disease Association
Charles Bonnet Syndrome Foundation
HHE Hemiconvulsion hemiplegia epilepsy syndrome - rare connect
NBIA Families in Australia (Facebook Group)
Muscular Dystrophy Foundation
Muscular Dystrophy SA
Muscular Dystrophy Queensland
Rett Syndrome Association of Australia
Senses Australia
Human Genetics Society of Australasia
Indian Organization for Rare Diseases
Muscular Dystrophy Association of WA
Prader - Willi Syndrome Association Australia
The Scarlett May Foundation
WA Register of Developmental Anomalies
VCFS 22q11 Foundation Inx
VCFS 22q11 Foundation Inx
Autoimmune Resource and Research Centre
Community Neurological Nurses Network Inc.
Telethon Kids Institute
Brain Tumour Alliance Australia Inc
Haemochromatosis Australia
Orpharma
Kalparrin
ARCAN
FOD (Fatty Oxidation Disorders) Family Support Group
The Centre for Personalised Immunology
Carers NSW
CDH Australia
Genetic Support Network of Victoria
Painaustralia
Lung Foundation Australia
MALAYSIAN RARE DISORDERS SOCIETY
The Neurological Council of WA
MS Australia
Multiple Sclerosis Limited
Trapeze
Baxalta
WMozzies
The Australian Phenomics Network
aPSGA
aHUS Patient Support Group Australia
Pfizer Australia
PNH Support Association of Australia
Alexion Pharmaceuticals Australasia Pty Ltd
MND Australia
Friedreich Ataxia Network
Research Australia
Rett Syndrome Association of Australia Inc.
Developmental Disability WA
Amicus Therapeutics
HSP Research Foundation Inc.
Alpha-1 Association of Australia
Fibromuscular Dysplasia Association of Australasia Inc.
Fragile X Association of Australia Inc
Australian College of Children & Young People's Nurses
Children's Tumour Foundation of Australia
Angelman Syndrome Association Australia
Angelman Syndrome Association Of Werstern Australia
Australian Pituitary Foundation
Australia Kabuki Syndrome Association Inc.
Batten Disease Support and Research Association (BDSRA)
Charcot-Marie-Tooth Association Australia
Myasthenia Gravis Association of Queensland Inc
Cystic Fibrosis Australia
Neroli Colvin
Kerry Leeds
Miss Sofia Rita Belmonte
Vivienne Travlos
Lyn Gaffney
Margaret Jamieson
Fay Mora
Josie Muller
Tereena Cocks
Raine Isaacs
Karen Lane
Damian Lech
Teena Kelly
Jolanda Visser
Deb Lynch
Michelle Corcoran
Wendy Verity
penny cameron
Deirdre Pinto
Valmae Ypinazar
Stephen Margolis
P Andersson
Danielle Tindle
Davinia Nieper
Kellie Thomas
Gareth Baynam
Ken Wibberley
Deborah Robins
Elizabeth Thompson
Kate Patterson
Desmond Connellan
John Bateman
Maria Kamper
Shanti Balasubramaniam
Tania Jayesuria
angela Barclay
Sarah Smith
Chris Cahir
Lyna Hernandez
Carol Flynn
Juanita Van Dam
Lea Chant
Tracy Dudding-Byth
Martin Delatycki
Emma Hamilton
Emma Hamilton
Yvonne Zurynski
Anne Fenwick
Fiona Elmer
Susan Hardy
Jackie Barreau
James Kyder-Gould
Ken Wibberley
Alison Butcher
Shirley Haddock
Joanne Smith
Sarah Welsh