Rare Voices Australia Parliamentary Event in Canberra
Published on: 26 March 2024

On Thursday February 29th, Carolyn Dews, IDFA CEO had the privilege of attending the Rare Voices Australia parliamentary event in Canberra. The theme, ‘Progress Beyond Policy,’ resonated deeply as we witnessed the launch of Australia’s inaugural National Recommendations for Rare Disease Healthcare. These recommendations aim to empower healthcare professionals to deliver high-quality care to individuals living with rare diseases, whether diagnosed or still seeking answers.

More than 2 million Australians have been diagnosed with a rare disease, it is a cause that is close to the hearts of many, and an important day for the Immune Deficiencies Foundation Australia (IDFA) community, using the occasion to educate people about Australians living with immunodeficiencies.

Rare Disease Day is a global observance dedicated to raising public awareness for rare diseases and calling attention to the unique challenges that people and their families living with these conditions face. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.

We extend our heartfelt gratitude to Rare Voices Australia for their unwavering dedication to advocating for individuals impacted by rare diseases. Together, let’s continue to raise awareness, drive progress, and foster support for those in need.

#RareDiseaseAwareness #HealthcareAdvocacy #RareVoicesAustralia