What is Rare Disease Day?

World Rare Disease Day is 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.

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases in Europe- World Rare Disease Day is a EURORDIS imitative engaging major alliances around the World. www.rarediseaseday.org

 The inaugural Rare Disease day was held on a 29th February because it is a ‘rare’ day!

As part of a team of charities and organisations that support children and families affected by rare diseases in Australia, the Steve Waugh Foundation was involved with Rare Disease Day for the first time 2010.

 

Why is Rare Disease Day important?

The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, without research and therefore, without reason to hope.

Rare Disease Day is the perfect occasion to promote that rare diseases need special attention.

• Rare diseases are life-threatening or chronically debilitating diseases.
• Patients with very rare diseases and their families are particularly isolated and vulnerable.
• The life expectancy of rare disease patients is significantly reduced.
• Many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities.
• The lack of specific health policies and the scarcity of expertise means delayed or no diagnosis and difficulty to access appropriate & relevant care.
• The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality.
• Research on rare diseases is scarce.

In Australia there is lack of awareness of the impacts of rare diseases and a lack of a strong coordinated approach to improving health services, advocacy and patient support. We are in an excellent position to learn from international initiatives that have elevated the importance of rare diseases in public health and welfare planning.

 

 

Focus for 2011 - "Rare But Equal”

 

 

 

The campaign this year is seeking to drive home the message that it is important to level the playing field within and amongst countries in the area of rare diseases.

This year, EURORDIS member national alliances in 22 countries are combining their efforts to put the spotlight on “Rare Diseases and Health Inequalities.”

The focus this year is to draw attention to the:

• Gaps in health that exist for rare disease patients between and within countries  
• Gaps in health that exist for rare disease patients compared to other segments of society

The campaign will serve to advocate for:

• Equal access for rare disease patients to health care and social services
• Equal access to basic social rights: health, education, employment, housing
• Equal access to orphan drugs and treatments

 

“People Living with Rare Diseases should be entitled to the same access and quality of care as any other patients. But today the reality is far from that.

The rarity of patients, medical experts, knowledge and resources are aggravating the vulnerability of rare disease patients who are suffering from life threatening, debilitating, and chronic diseases.

We are certainly not asking for more or better access and care than for other chronic diseases. To the contrary, we share the common cause of all chronic diseases. However, we believe that rare diseases is one of the most dramatic cases of health inequalities today both internationally and in particular in Europe,” argues EURORDIS’ CEO, Yann Le Cam.

‘The families affected by rare diseases are medically disenfranchised population that fall through the cracks of every health care system in the world." 

Abbey S. Meyers, President National Organisation for Rare Illnesses. (NORD, USA)

 

---

---

 

 

Steve Waugh Foundation Rare Disease Day 2011

 

Rare diseases are ‘rare but common’ and affect up to 7-10% of any population. In Australia that is up to 2 million people, of which up to 400,000 are children, a similar magnitude to Australian diabetes sufferers.

The Steve Waugh Foundation is taking a leadership role on behalf of the rare disease team, and has facilitated a coordinated effort with a number of other major organisations and charities involved in the rare disease arena to celebrate the day and initiate for the future a collaborative effort right across the country, and a coordinated national approach to the agenda.

Inaugural organisations that have joined us for the day include major groups such as Association of Genetic Support of Australasia (AGSA), Australian Paediatric Surveillance Unit (APSU), SMILE Foundation (the only other Foundation supporting rare diseases in Australia), Association for the Wellbeing of Children in Healthcare (AWCH) and The Centre for Genetic's Education. 

All children, no matter who they are or where they come from, deserve the chance to live life to their full potential. Each child has a story to tell. While some look forward to the future with hope, for the others, every day is a challenge.

The Steve Waugh Foundation is working to help change things for children with a rare disease by giving hope, providing medicine, equipment and treatment, supporting education and research, as well as supporting specific projects and programs.

The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, without research and therefore, without reason to hope.

 The Steve Waugh Foundation is ‘somewhere to turn’

 

A ‘RARE’ CHAMPION! 

We are only as good as the people and team around us.

The Steve Waugh Foundation is extremely fortunate to have the extraordinary support of businessman and philanthropist Basil Sellers AM as one of its valued Starting XI Patrons. A long time supporter of Steve Waugh, Basil has joined ‘Team Waugh’ to go into bat for a coordinated national approach to rare diseases in Australia.

Basil is passionate about the mentoring & developing the causes he supports.

Throwing his support behind World Rare Disease Day Australia 2011, Basil has committed valued funds towards this year’s World Rare Disease Day media and promotional activities at the Sydney Opera House to support the rare disease team and raise public awareness of needs of children and families affected by rare diseases, the inequality of services and support and the need for a coordinated effort to get equality for these children & their families.

On behalf of Steve, the Foundation, and the children and families affected by rare diseases, we thank this year’s Champion behind World Rare Disease Day Basil’s Sellers with gratitude & appreciation.

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.

The Steve Waugh Foundation is proud to take the inaugural lead role in sponsoring the promotion of World Rare Disease Day in Australia.

 

Our World Rare Disease Day activities "A Team Effort"

Media Call:

On the morning of World Rare Disease Day, a media call will take place in the Utzon Room at the iconic Sydney Opera House. Sponsored by the Foundation, 8 major rare disease organisations will collectively participate in this media call. Steve Waugh is calling on his networks of media contacts and profiled friends to support the cause. It is the beginning of a coordinated national approach to World Rare Disease Day in Australia. From this event, a National Committee will be developed to build a World Rare Disease Day strategy for Australia in the future.

Marketing & Promotion

A range of marketing & promotional tools have been developed by the Foundation for generic use including: City of Sydney Street Banners, Rare Disease Day Newsletter, Rare Disease Day E-Communications, Rare Disease Day Website Australia Page (with AGSA), Media Kit, Corporate Pull Up Banners, T’Shirts and DVD Presentation ‘I Believe I can Fly'

Forever Green Dinner & Show

The Steve Waugh Foundation Forever Green Dinner is the Foundation’s premier bi-annual major fundraising event. Guests have been invited to join Steve Waugh and the Steve Waugh Foundation at a rare and exclusive evening at the prestigious Sydney Opera House for a ‘Dinner & Show,’ Monday 28th February 2011. Guest are supporting children and families affected by rare diseases and raising awareness and funds for the Steve Waugh Foundation on World Rare Disease Day. The day’s activities for the Foundation culminate at the Opera House with this exclusive dinner.  Australia’s elite corporate networks will have an enjoyable evening while helping the Steve Waugh Foundation give children & families affected by rare diseases ‘somewhere to turn’   

 

 

Links for further information  

Visit the Australia Rare Disease Day website

Visit Eurordis – International Rare Disease Day website 

 

For media related enquiries please contact:

Trish van Leeuwen CEO Steve Waugh Foundation Global

e: trish.vanleeuwen@335enterprises.com

m: +61 419 964 290