australianpompe.com
Pompe | Links
http://australianpompe.com/links
Diet & Exercise. Pompe Newborn Screening Request. Press Release: Government approves lifesaving treatment. Press Release: Children to Receive Treatment. AMDA (Acid Maltase Deficiency Association). Association for Glycogen Storage Disease (UK) Limited. Federal Department of Health. Life Saving Drugs Program. Federal Department of Health. Myozyme Application form and Guidelines. No products in the basket.
missingschool.org.au
Links | Missing School
http://missingschool.org.au/resources/links
Parent and Practitioner Consultation. St George Research with ARACY. Who are they, how do we know what works, and whose job is it? JOIN OUR MAILING LIST AND GET A FREE COPY OF SCHOOL STRATEGIES FOR SICK KIDS. We respect your email privacy. MissingSchool is committed to linking you to useful resources and organisations concerned with keeping seriously sick kids connected to their schools. This is a work in progress! The Association of Pediatric Hematology Oncology Education Specialists (APHOES). Home to l...
unrefreshed.blogspot.com
Unrefreshed: To turn the invisible visible
http://unrefreshed.blogspot.com/2013/09/to-turn-invisible-visible.html
Helping to raise awareness of Idiopathic Hypersomnia. Results from Idiopathic Hypersomnia support group survey. Friday, 20 September 2013. To turn the invisible visible. This September is the 1st annual Idiopathic Hypersomnolence Awareness Month. Http:/ www.hypersomnolenceaustralia.com/210919908. Subscribe to: Post Comments (Atom). Before you wake a sedative is injected into your system.at a level likened to waking up after an anaesthetic. You are groggy and displaced. "Huh? View my complete profile.
thecultureconcept.com
Melbourne Art Book Fair - NGV International in May, 2015 | The Culture Concept Circle
http://www.thecultureconcept.com/circle/melbourne-art-book-fair-ngv-international-in-may-2015
Art, design, music, fashion and style, past, present and future. Arts & Entertainment. April 15, 2015. Melbourne Art Book Fair – NGV International in May, 2015. Melbourne is the arts and cultural capital of Australia. Worldwide it is also one of the eleven UNESCO Cities of Literature. May 1 – 3, 2015. The National Gallery of Victoria (NGV). Will present the first Melbourne Art Book Fair. The Melbourne Art Book Fair. Making their Australian debut will be international guests Printed Matter (USA). There wi...
thecultureconcept.com
The Prodigal Son - A Parable about Love that Packs a Punch | The Culture Concept Circle
http://www.thecultureconcept.com/circle/rescue-special-ops-to-reflecting-on-a-parable-about-love
Art, design, music, fashion and style, past, present and future. Arts & Entertainment. June 29, 2014. The Prodigal Son – A Parable about Love that Packs a Punch. Today we live in a global society, whose complexities of life and its ups and downs have an ability to impact on just about everyone else on our planet. The pattern of the prodigal is: rebellion, ruin, repentance, reconciliation, restoration*. It was an appalling scenario that had me thinking about the fragility surrounding complex human, most e...
liveitwhileyoucan.com
Rare Disease Day 2015 | Live It While You Can
http://liveitwhileyoucan.com/rare-disease-day-2015
Live It While You Can. Life – The good, The Bad, The Beautiful and The Ugly. Rare Disease Day 2015. February 28, 2015. Today February 28 is Rare Disease Day, a day raising awareness of the many rare diseases that affect thousands of people thought Australia and the world…. I had never thought too much about rare diseases until they impacted my family…. Duplication 15q 13-11 is a rare condition with less than 1000 known cases worldwide. Rare Disease Day Australia – Facebook page. Australian / 20 Years / D...
patient.genome.one
Partners - Genome.One
https://patient.genome.one/partners
Where can I find more information or support? Support for people affected by rare or genetic conditions in Australasia. Genetic and rare disease network. Support and information for people with rare or genetic conditions. NSW Health Centre for Genetics Education. A listing of genetic support groups throughout Australia. A national alliance of Australian’s living with a rare disease. P 61 2 9359 8002. Darlinghurst, NSW 2010,. ACN 608 029 732.
genome.one
Partners - Genome.One
https://www.genome.one/partners
Whole Genome Sequencing Tests. About Whole Genome Sequencing. Additional support for your patients. Support for people affected by rare or genetic conditions in Australasia. Genetic and rare disease network. Support and information for people with rare or genetic conditions. NSW Health Centre for Genetics Education. A listing of genetic support groups throughout Australia. A national alliance of Australian’s living with a rare disease. P 61 2 9359 8002. Darlinghurst, NSW 2010,. ACN 608 029 732.
rarediseasedayaustralia.com.au
GET INVOLVED ON THE DAY « Rare Disease Day Australia
http://www.rarediseasedayaustralia.com.au/get-involved-on-the-day
Rare Disease Day Australia. ABOUT RARE DISEASE DAY. WHAT IS A RARE DISEASE? GET INVOLVED ON THE DAY. GET INVOLVED ON THE DAY. Rare Disease Day is open to everyone! You the public, individuals, families, patients, patient organisations, health professionals, researchers, drug developers, public health authorities the more, the better! As you’ll find out, there’s more than one way of getting involved. Let’s join our efforts to give hope to rare disease patients all over Australia! 1 Join the Team Effort!
rareconnect.org
Conectando globalmente pacientes con enfermedades raras - RareConnect
https://www.rareconnect.org/es
Busca y únite a una comunidad. Busca o abre una discusión. Conectando globalmente pacientes con enfermedades raras. Comience una comunidad para una enfermedad rara en colaboración con nosotros. Visite nuestros grupos de discusión. Vea todas nuestras comunidades. Weronika, de Polonia, vive con Gangliosidosis GM1. Foto cortesía del Concurso de Fotografía de EURORDIS. O UN GROUP DE DISCUSIÓN. ÚNASE A UNA COMUNIDAD O A UNA CONVERSACIÓN. COMPARTA SU HISTORIA O HAGA UNA PREGUNTA. Narración de las experiencias.
SOCIAL ENGAGEMENT