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Rare Disease Day - Wednesday 28th February 2018

Rare Voices
27 February 2018
The annual Rare Disease Day raises global awareness about rare diseases and their impact. The theme this year is research.
 
For the majority of rare diseases, there is no cure and many go undiagnosed.
 
Whilst Multiple Sclerosis (MS) is relatively well-known and doesn’t tend to be classified as a rare disease, MS too has no known cause and currently no cure and in many cases diagnosis is substantially delayed. And MS is distinctive for a number of reasons including:
  • No two people experience the condition in the same way
  • It has rare forms, such as MS in young children (Paediatric MS) and teenagers.
  • Of the three types - Relapsing-remitting (RRMS), Secondary progressive (SPMS) and Primary progressive (PPMS), the latter is identifiable as one of the least common (rarer) types of MS, which we recognise in our broad advocacy and lobbying activities.
Our partner organisation MS Research Australia is one of the MS organisations in the global Progressive MS Alliance, which seeks to end PPMS. Coordinated by the MS International Federation, we watch with interest Alliance progress, news and events. For more information visit their website at www.progressivemsalliance.org and for key Alliance updates, visit the MS Research Australia website here: www.msra.org.au/progressive-ms-alliance/.
 
For MS Australia (MSA), a key focus is on all people living with MS, being able to effectively manage their condition. We continue to work with our partner organisations to ensure the MS community and their healthcare teams, have access to the broadest range of affordable treatments as possible.
 
In 2017, the drug Ocrevus ™ was registered for use in Australia by the Therapeutic Goods Administration (TGA), for use in people living with Primary Progressive MS, to delay the progression of physical disability.
At this stage, the Pharmaceutical Benefits Advisory Council (PBAC) has not recommended listing Ocrevus ™ on the Pharmaceutical Benefits Scheme (PBS) for PPMS; MSA will continue to pursue PBS listing for this medication for people with PPMS as a matter of priority and will keep you posted on progress.
 
As the national peak body for people living with MS in Australia, we are proud of our affiliations with other peak bodies, such as Rare Voices Australia (RVA) – a partner of the International Rare Disease Day movement, organised by Rare Diseases Europe (EURORDIS).
 
Like RVA, we understand the challenges of navigating the health care system and lobbying the federal government (and others) on behalf of our communities, which for RVA is people living with rare diseases.
 
On the occasion of Rare Disease Day, we wish to acknowledge those affected by rare diseases and shine a spotlight on the rare forms of MS mentioned above – including children and teens with the condition, and people living with Progressive MS around Australia, their families, friends and carers.
 
For more information on Rare Disease Day, local events, Rare Voices Australia and more visit: