Posted - February 2013 in HSPRF News
Rare Disorders without Borders
The sixth international Rare Disease Day takes place on 28 February 2013. This year’s slogan “Rare Disorders without Borders” emphasises the need for international cooperation.
Here is the Rare Disease Day, Feb. 28, 2013 Official Video.
And here is a Rare Disease Day 2013 Message from the European Rare Disease Organisation.
Rare Voices Australia (RVA) http://www.rarevoices.org.au/ is a new organisation that has been established in response to the consensus call from over 200 national attendees at the inaugural ‘Awakening Australia to Rare Diseases’ international symposium held in Fremantle, Western Australia, in 2011.
The primary objective of Rare Voices Australia is to unite and represent the interests of all Australians living with a rare disease or disorder, and their families, as one voice, with the immediate aim of increasing both public and political awareness of the burden of rare disease, and the ultimate aim of achieving better outcomes nationally for those whose lives are impacted.
With a strong and uniﬁed voice, we can:
- identify and address common issues
- promote cohesive stakeholder collaborations and networks locally, nationally and internationally
- lobby for improved access to information and best-practice standards of care for people living with rare conditions
- inﬂuence public policy, and
- advocate for the development of a National Plan for Rare Diseases.
Write to your local Federal Member of Parliament
Here is a sample letter that you can send by either e-mail or postal mail to your local federal MP to promote the issue of rare diseases and seek their support. You can find contact details for your MP at http://www.aph.gov.au/Senators_and_Members/Members . There is a lunch at Parliament House in Canberra on Wednesday, 20 March at 12 noon that you can encourage them to attend.
[Insert your address]
The Hon [insert MPs name], MP
Dear [insert name of MP],
Rare Disease Day 2013
I am/we are writing to you to formally introduce myself. My name is as [insert name] and I live in your electorate of [insert electorate]
As my local MP I would like to encourage you to attend the Rare Disease Day 2013 BBQ Luncheon which is being held at the House of Representatives Courtyards 27J & 27K, Parliament House, Canberra on Wednesday 20th March 12.00 – 1.30pm.
I have/A family member has/I care for someone with Hereditary Spastic Paraplegia (HSP), an inherited, degenerative disease affecting mainly the legs, causing muscle weakness, spasticity and severely impairing walking.
I will be/ we are attending the reception and I/we would very much like to meet you there to discuss the issues faced by rare disease community further. [Delete this sentence if you are not attending the reception]
The theme and slogan for Rare Disease Day 2013 is ‘Rare Disorders without Borders.’ Fighting the over 6,000 rare diseases which, taken together, affect as many as 1 in 10 people, and for which expertise is scarce and scattered, requires cross-border cooperation.
I/we hope that you can attend the event in Canberra to mark Rare Disease Day.
I/we look forward to hearing from you on this important issue to us all.
[Insert role and organisation if appropriate]