GET INVOLVED ON THE DAY

Rare Disease Day is open to everyone!

You the public, individuals, families, patients, patient organisations, health professionals, researchers, drug developers, public health authorities – the more, the better!

As you’ll find out, there’s more than one way of getting involved. Let’s join our efforts to give hope to rare disease patients all over Australia!

1.       Join the Team Effort!

Rare Disease Day is about joining forces to provide better care to people living with a rare disease. Join the community by adding your organization or support group to the growing list of Australians supporting Rare Disease Day and let us know if you’ll organise an event – If you register your support you’ll receive the Rare Disease Day Australia email updates.

  • To add your organization click here
  • To see the list of organizations supporting the Australian Rare Disease Day click here

2.       Support Rare Disease Day by Using Social Media

Not a patient organisation but you still want to organise an activity, share your story of the day, or simply help relay a message of support? Support us by spreading the word using social media.

  • You can join other supporters signed up on our Facebook page
  • Tweet about Rare Disease Day by using the hashtag #rarediseaseday
  • Follow the Australian Rare Disease Day Twitter page @RareDiseaseAus
  • Use the social icons on the website to encourage others to support Rare Disease Day

3.       EURORDIS

Rare Disease Day is coordinated on an international level by EURORDIS. They’ve created communications materials to help local organizations to organise rare disease day activities.

* EURORDIS only ask only that this logo be displayed in the spirit in which it was intended—as a non-commercial symbol of global partnership in the search for ways to improve the lives of those affected by rare diseases.

4.       Other ways to get involved – ideas for supporting the campaign

Some easy ideas

  • Display posters, images or other awareness raising media such as ballons
  • Distribute stickers and flyers
  • Organise rare diseases events around topics paramount to patients
  • Organise an event focused on rare diseases
  • Coordinate letter writing or email campaigns to local policy or national policy decision makers
  • Arrange to meet with local and national authorities

A bit more planning

  • Send a press release to the media
  • Award advocates of rare disease patient causes
  • Organise interviews with the media
  • Organise fund-raising events
  • Invite a VIP to endorse the Day
  • Implement a help line providing information about rare diseases
  • Organise a visit to a rare disease research lab by an MEP or Health Minister

5.     Useful links

Eurordis:
NORD:
RVA:
GA Aus:
Orphanet:
 Rare Diseases Europe, www.eurordis.org
National Organisation for Rare Diseases, www.rarediseases.org
Rare Voices Australia, www.rarevoices.org.au
Genetic Alliance Australia (formerly AGSA), www.agsa-geneticsupport.org.au
 www.orpha.net

 

Thank you for joining in!

Click here to Contact Us.