Rare Diseases

AWCH is a supporter of World Rare Disease Day, a global event held annually on the last day of February.

Its main objective is to raise awareness of rare diseases and their impact on not only the kids living with them and their families, but also on the wider community as a whole.

World Rare Disease Day 2014 - Join Together for Better Care

The video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families.

World Rare Disease Day Theme for 2013 - Rare disorders without borders

joining-hands; rare-disease-day-2013

AWCH Staff and volunteers join hands in support of rare disease patients around the world! check out our photo at Joining Hands for Rare Disease Day 2013 http://www.flickr.com/photos/rarediseaseday/8489851231

 

World Rare Disease Day Theme for 2012 - Solidarity

AWCH Staff and volunteers joined other organisations in Martin Place, Sydney to mark the 5th World Rare Disease Day to help raise awareness for rare diseases.

World Rare Disease Day Focus for 2011 - Rare but Equal

AWCH attended the World Rare Disease Day 2011 event at Sydney Opera House, convened by the Steve Waugh Foundation.

 


Beckwith Wiedemann Syndrome (BWS) Conference 2013 Sydney Australia 

Date: 30 October – 1 November, 2013
Venue: Novotel Sydney, Parramatta
350 Church Street
Parramatta NSW 2150

The conference is aimed at providing updates on the latest research into BWS, clinical procedures, the screening protocol and sharing experiences between families and medical professionals from across Australia, New Zealand and the USA.

 


Forum for Young People Living with Rare Disease ~ The Challenges of the Many Transitions to Adulthood
A forum held last Saturday the 23rd of February at the University of Sydney, identified gaps and needs for young people living with complex, chronic rare diseases and medical conditions. Young people aged 15 to 23 years, and parents attended. Many described the transition from paediatric services to adult health services as a “trial”.

 


  agsa-logo

AGSA - The Association of Genetic Support of Australasia facilitates support for those affected directly or indirectly by genetic conditions / rare diseases throughout Australasia.

 

 

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Rare Voices Australia - The unified voice for all Australians living with a rare disease.

 

 

parent2parentnzParent to Parent New Zealand

A national organisation working with families and children affected by disabilities, health impairments, rare syndromes and special needs. Help Parent to Parent 'broaden its network of parents willing to support others seeking support along their journey.' Check out the current list to view contacts they are looking for.

 

  NZORD

  NZORD  New Zealand Organisation for Rare Disorders - Provides New Zealand's central starting point for information about rare diseases.

 

NORD

 NORD  National Organization for Rare Disorders - dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.

  
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EURORDIS - a non-governmental patient-driven alliance of patient organisations representing 544 rare disease patient organisations in 49 countries.

 

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   Rare Connect
- connecting rare disease patients globally.

 

Family Experiences Living with a Rare Disease
Learn from other families, in their own words, what their journey has been like after a diagnosis www.babysfirsttest.org/family-experiences

Mysterious genetic disorder warning - http://ten.com.au/630pm-with-george-negus.htm?movideo_p=44243&movideo_m=131362 - Parents and GPs are being urged to be aware of a mysterious genetic disorder that's as common as Down's Syndrome.

The Canadian MPS Society has developed a video to share the stories of Canadians affected by Mucopolysaccharide (MPS) diseases and the Canadian MPS Society's vision of a brighter future. This is an informatiove story and something to consider no matter what Rare Disease people have.