Rare Disease Day 2010
What is Rare Disease Day?
Held on the last day of February to raise awareness for rare diseases rare and improve access to treatment and medical representation for individuals with rare diseases and their families.
Rare Disease Day was established in 2008 because, according to the European Organization for Rare Diseases (EURORDIS), treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families.
While there were already numerous days dedicated to sufferers of individual diseases, there had previously not been a day for representing sufferers of rare diseases.
The inaugural Rare Disease day was held on a 29th February because it is a ‘rare’ day!
Why is Rare Disease Day important?
Rare Disease Day is the perfect occasion to inform or remind people that rare diseases need to be paid special attention to, because:
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable. The life expectancy of rare disease patients is significantly reduced and many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities.
The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.
The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to healthcare services and to orphan drugs.Research on rare diseases is scarce
Research on rare diseases is scarce
Focus for 2010 - "Bridging Patients and Researchers”
"Patients and Researchers: Partners for Life!"
Patients need Research...
Research represents hope for the millions of rare disease patients who are without cure today. In the last decade huge leaps have been made in genetics and medical technology, raising great hopes from scientific and therapeutic progress.
However, existing public research programmes for rare diseases are not sufficient; drug development to treat a small number of patients remains very limited and the fact that patients and researchers are scattered makes it difficult to aggregate the value of the knowledge already acquired.
Research needs Patients…
Rare disease patients are the best partners researchers can ask for – Without their participation in clinical trials, bio banks, databases and registries, research would be brought to a standstill. In addition to being the subjects of the research, patients are ‘experts by experience’ – they and their families know their disease better than anyone else. They can therefore help find therapeutic clues and advance basic research by furthering understanding into the epidemiology and natural history of the disease.
Rare disease patient organisations can be valuable partners in research projects – by funding research teams, equipment and training or by helping constitute cohorts and organising campaigns to collect biological samples. Patients often act as catalysers for increased collaboration amongst researchers, clinicians, industry and patients. This is why it makes sense for patients and researchers to work closer together!
- Rare Disease Research is an important area of research
- Rare Disease Research needs to be better funded
- Patients and Researchers win by working together
Steve Waugh Foundation Rare Disease Day 2010, Steve Waugh Foundation
The Steve Waugh Foundation is a registered ‘Friend’ of Rare Disease Day.
The Steve Waugh Foundation is part of a team of organisations in Australia working to support children and families affected by rare diseases. This year we will focus our resources and efforts to build awareness of the cause & Rare Disease Day 2010 through:
- A public Community Service Announcement Campaign on one of Australia’s most viewed free to air television stations, Channel 9. Key message: As a cricketer statistics were important to Steve and the team. Today these are the numbers he cares about the most:
‘It is estimated 1.2million Australians suffer from 1 of 8,000 rare diseases, over 200,000 of which are children. We’re ‘going into bat for rare diseases’ and invite you to join the team. Together we can give these brave children and their families ‘somewhere to turn’.
- Hosting a Media Conference for the Australian Paediatric Surveillance Unit (APSU) who are facilitating a National Working Committee on a National Agenda for a coordinated effort to rare diseases in Australia. The media conference is extended to all members of the National Working Committee, key stakeholders and the media – February 26th 2010
- Supporting & attending the Australian Paediatric Surveillance Unit (APSU) workshop entitled: "Responding to the common problem of rare diseases: A workshop for health professionals” - February 27th 2010
The Steve Waugh Foundation looks forward to working with all charities and organisations that support children and families affected by rare diseases in Australia and we look forward to being a member of the Australian team in this arena.
www.stevewaughfoundation.com.au
Visit the Australia Rare Disease Day page
Visit Eurordis – International Rare Disease Day
For any media enquiries please contact:
Trish van Leeuwen
CEO Steve Waugh Foundation Global
trish.vanleeuwen@335enterprises.com
MB: +61 (0) 419 964 290