rarevoices.org.au

Rare Voices Australia - Home

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page. FOR ALL AUSTRALIANS LIVING WITH A RARE DISEASE. Stay up-to-date Subscribe to our free eNews. RVA e-News - July 2015. Adult Pompe Disease Patients Access to Treatment.

http://rarevoices.org.au/

OVERVIEW OF rarevoices.org.au

TRAFFIC RANK

>1,000,000

REVIEWS

0

PAGES IN THIS WEBSITE

20

LINKS TO THIS WEBSITE

CONTACTS

ADDRESSES

SOCIAL LINKS

ONLINE SINCE

WEBSITE DETAILS

SEO

PAGES

SIMILAR SITES

TRAFFIC RANK FOR RAREVOICES.ORG.AU

TODAY'S RATING

>1,000,000

TRAFFIC RANK - AVERAGE PER MONTH

BEST MONTH

October

AVERAGE PER DAY Of THE WEEK

HIGHEST TRAFFIC ON

Wednesday

TRAFFIC BY CITY

Sign up

CUSTOMER REVIEWS

Average Rating: 3.8 out of 5 with 9 reviews

5 star

5

4 star

1

3 star

1

2 star

0

1 star

2

Hey there! Start your review of rarevoices.org.au

AVERAGE USER RATING

Write a Review

WEBSITE PREVIEW

LOAD TIME

1 seconds

FAVICON PREVIEW

16x16

CONTACTS AT RAREVOICES.ORG.AU

ADD CONTACT

Login

TO VIEW CONTACTS

Remove Contacts

FOR PRIVACY ISSUES

CONTENT

PAGES IN
THIS WEBSITE

20

SSL

EXTERNAL LINKS

63

SITE IP

168.63.255.205

LOAD TIME

0.95 sec

SCORE

6.2

PAGE TITLE

Rare Voices Australia - Home | rarevoices.org.au Reviews

<META> DESCRIPTION

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page. FOR ALL AUSTRALIANS LIVING WITH A RARE DISEASE. Stay up-to-date Subscribe to our free eNews. RVA e-News - July 2015. Adult Pompe Disease Patients Access to Treatment.

<META> KEYWORDS

1 dialog box

2 rare voices australia

3 get e news

4 become a member

5 make a donation

6 facebook

7 twitter

8 linkedin

9 instagram

10 youtube

CONTENT

Page content here

KEYWORDS ON PAGE

dialog box,rare voices australia,get e news,become a member,make a donation,facebook,twitter,linkedin,instagram,youtube,our purpose,what we do,strategy,rva team,smac team,governance,partner organisations,careers,rare diseases,personal stories,orphan drugs

SERVER

Microsoft-IIS/8.5

POWERED BY

ASP.NET

CONTENT-TYPE

utf-8

GOOGLE PREVIEW

Rare Voices Australia - Home | rarevoices.org.au Reviews

https://rarevoices.org.au

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page. FOR ALL AUSTRALIANS LIVING WITH A RARE DISEASE. Stay up-to-date Subscribe to our free eNews. RVA e-News - July 2015. Adult Pompe Disease Patients Access to Treatment.

INTERNAL PAGES

rarevoices.org.au

1

Rare Voices Australia - Board of Directors

http://www.rarevoices.org.au/page/10/board-of-directors

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Miracles from Heaven" - Exclusive Movie Preview - 14th March. Join Hand Prints Across Australia Campaign. Hands Across Australia 2016. Hands Across Australia 2015. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page.

2

Rare Voices Australia - What Is An Orphan Drug?

http://www.rarevoices.org.au/page/19/what-is-an-orphan-drug

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Miracles from Heaven" - Exclusive Movie Preview - 14th March. Join Hand Prints Across Australia Campaign. Hands Across Australia 2016. Hands Across Australia 2015. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page.

3

Rare Voices Australia - RVA SMAC Team

http://www.rarevoices.org.au/page/72/rva-smac-team

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Miracles from Heaven" - Exclusive Movie Preview - 14th March. Join Hand Prints Across Australia Campaign. Hands Across Australia 2016. Hands Across Australia 2015. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page.

4

Rare Voices Australia - Employment

http://www.rarevoices.org.au/page/58/employment

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Miracles from Heaven" - Exclusive Movie Preview - 14th March. Join Hand Prints Across Australia Campaign. Hands Across Australia 2016. Hands Across Australia 2015. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page.

5

Rare Voices Australia - What We Do

http://www.rarevoices.org.au/page/8/what-we-do

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Miracles from Heaven" - Exclusive Movie Preview - 14th March. Join Hand Prints Across Australia Campaign. Hands Across Australia 2016. Hands Across Australia 2015. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page.

UPGRADE TO PREMIUM TO VIEW 15 MORE

TOTAL PAGES IN THIS WEBSITE

20

LINKS TO THIS WEBSITE

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.

UPGRADE TO PREMIUM TO VIEW 53 MORE

TOTAL LINKS TO THIS WEBSITE

63

SOCIAL ENGAGEMENT

RareVoicesAustralia

RareVoices

OTHER SITES

rarevisualkei.wordpress.com

Old school vk | Just another WordPress.com weblog

Just another WordPress.com weblog. On October 14, 2010 by Marcus Jensen. I don’t know why I just stopped uploading stuff here… But I am thinking of changing to a .blogspot server, and get one or two people to help me with uploads, just to get a active vk blog. So is anyone intrested? Posted in DEATH MARCH KANTAI. On May 19, 2010 by Marcus Jensen. I’m sure fans of the Angura scene will like this band, i think it’s pretty rare. Never seen their stuff anywhere. 3 Picnic ni iku Nikku. 5 Ike ni e. Because the...

rarevive.blogspot.com

RAREVIVE

Monday, March 21, 2011. Hope to make a new one every other week. Suggestions for future comments are welcomed :-). Monday, March 7, 2011. The satisfaction of finally being able to defeat Gruntilda in, Banjo-Kazooie. This is exactly what I wanted to do after achieving that! Sunday, March 6, 2011. Ah, Stop 'n' Swop. The mystery that left gamers puzzled for years. Saturday, March 5, 2011. Tuesday, February 22, 2011. So, what's going on? Where the heck is this week's theme? When do we get to draw? To answer ...

rarevocabularies.wordpress.com

Rare Vocabularies | Just another WordPress.com weblog

This word abbatial is an adjective I cannot find this word in my dictionary and only find abbey and abbot these two words related to abbatial . The word abbey is a noun it means a large church with buildings connected to it where a group of monks or nuns live or used to live the second word abbot is a person who have to charge an abbey. Who live in there? 5 years, 11 months ago. Hello, my name is Ulrica. It’s good to have you at my blog. 6 years, 2 months ago. Just another WordPress.com weblog.

rarevodkas.com

Domain pending ICANN verification.

This domain name is pending ICANN verification. Welcome to rarevodkas.com Domain name registered by 123Reg/Webfusion. Please be advised that as of the 1st January 2014 it has now become a mandatory requirement from the Internet Corporation for Assigned Name and Numbers (ICANN) that all ICANN accredited registrars verify the WHOIS contact information for all new domain registrations, domain transfers and registrant contact modifications. Why has this domain been suspended? If you have not received the ver...

rarevoiceawards.org

Rare Voice Awards Gala » A Celebration to Honor Advocates who gave Rare Disease Patients a Voice on Capitol Hill

2014 Nominees & Winners. Save the date for 2015! The 2015 RareVoice Gala will be held on November 4th. RareVoice Award nominations are open to the public. We encourage the community to nominate individuals and organizations who advocate for legislation and policy that benefits the rare disease community. Deadline to submit nominations is Friday, July 31, 2015. Click here to see this 2014's list of impressive and inspirational nominees and Abbey Winners! Rare Voice Awards Gala 2015.

rarevoices.org.au

Rare Voices Australia - Home

Round Table of Companies. What Is A Rare Disease? Living With a Rare Disease. A-Z of Support Organisations. A-Z of Rare Diseases. What Is An Orphan Drug? Access to Orphan Drugs. Current Approved Oprhan Drugs. Rare Disease Day Events. Rare Disease Day Banners and Logos. Ways to Get Involved. Become an RVA Member. Create a Fundraising Page. FOR ALL AUSTRALIANS LIVING WITH A RARE DISEASE. Stay up-to-date Subscribe to our free eNews. RVA e-News - July 2015. Adult Pompe Disease Patients Access to Treatment.

rarevols.co.uk

Patrick Pollak

Antiquarian and Rare Books, Manuscripts, Images and. Browse A - Z. Author A - Z. Title A - Z. Welcome to our website. We hope you will find something to interest you. Our stock can be browsed under Subject, Author or Title. For speed and convenience you can use the Quick Search facility. On-line purchasing is totally secure but you may order by phone or fax if you prefer. We will send e-mail lists of items in any subject area on request. 2007 Patrick Pollak Rare Books site design: creative.uk.net.

rarevolume.com

rarevolume.com - Registered at Namecheap.com

This domain is registered at Namecheap. This domain was recently registered at Namecheap. Please check back later! This domain is registered at Namecheap. This domain was recently registered at Namecheap. Please check back later! The Sponsored Listings displayed above are served automatically by a third party. Neither Parkingcrew nor the domain owner maintain any relationship with the advertisers.

rarevon.com

하이엔드 편집샵 "레어본"입니다.♪

rarevonindien.com

Web Page Under Construction

This Site Is Under Construction and Coming Soon. This Domain Is Registered with Network Solutions.

rarevosracing.com

welcome | Rare Vos Racing

Pro Cycling team Rare Vos Racing. Is an UCI Elite woman's cyclocross team with a grass roots woman's support club team. A womans bicycle racing supporter, we support/sponcer woman's racing: Road, Cyclocross, Track. Silk City Manchester Cross Race. Cassie's Race report from Nittany Day 1! Spending the weekend in PA was great since Vickie and I are stayed with my dad, Dennis, who was a fantastic host. The temps were in the 80's so it fel . All right reserved, 2015 Rare Vos Racing.