To date there have been 6,000-8,000 rare diseases diagnosed but this number will likely continue to rise with further advances in technology and knowledge.
Using prevalence statistics from other developed countries, it is estimated that there are 120,000-150,000 Australians (6-8% of the population) affected by a rare disease.
This may not sound like a lot of people (out of a population of 25 million people), particularly compared to other diseases such as cancer or heart disease but the suffering experience by these patient and the impact on families is no less.
However because of the relatively smaller number of the population affected, it is often difficult for patients and their families to find treatments, specialist medical teams who can help or even patients or families with similar issues.
We have had personal experience with kids with rare diseases. What we have observed is that it is a challenge to find support, raise awareness in the community and generate interest for funding of vital research.
By their nature rare diseases often lack support and recognition.
Therefore we are committed to supporting not only research into cures and treatments but also in raising awareness in the community.
Of those rare diseases identified, approximately 80% are related to genetic causes. This makes the diagnosis and treatment or many rare diseases more complex requiring ongoing funding. However without sufficient awareness, funds donated for research are often directed to more prevalent, higher profile diseases in the community.
Therefore we are pleased to support organisations such as the Steve Waugh Foundation, Rare Voices and Snowdome Foundation. We have also made donations of medical equipment to other causes such as missions as part of Operation Smile.
Ultimately we would love to be able to be in a position to allocate funding directly to research projects or for raising awareness but in the meantime we are delighted to support these outstanding organisations (and many more).
We intend to donate a percentage of our profits to these and other organisations involved in helping patients and their families with rare diseases. To date we have donated a relatively small amount to these causes but even our relatively small contributions can make a bigger impact than if we were to donate to larger more well-known causes.
With your help and support we can grow the contributions that we donate.
By purchasing through our website you will not only get quality medical equipment at a great prices, you will also be making a positive impact to lives of patients suffering from rare diseases as well as their families.
Thanks for reading and on behalf of patients with rare diseases and their families thanks for helping.