🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

The Rare Disease Disability Network is an RVA-led network of leaders from RVA Partner groups/organisations. It provides peer support & capacity building for rare disease community-led organisations/stakeholders & will help inform the Rare Disease Disability Project. #RareDisease

Personal story of the month🌟 Claudette’s story highlights the importance of early diagnosis and the long-term impacts of living with a rare disease. Read Claudette's story on RVA's website: rarevoices.org.au/personal-story…

As part of the Rare Disease Disability Project, RVA is facilitating 2 virtual kitchen table peer support sessions: one for people living with rare disease disability & another for caregivers of people living with rare disease disability: bit.ly/3ETuIs3 #RareDisease

The RARE Portal is a digital library with rare disease information and resources for people living with a rare or undiagnosed disease, families and carers, health professionals, and researchers. Visit rareportal.org.au today.

RVA Partner, Childhood Dementia Initiative, is hosting a webinar to present interim findings from 4 research projects funded by the Australian Government’s Medical Research Future Fund (MRFF) for childhood dementia. More details: events.humanitix.com/mrff-webinar

Happy Mother's Day to the amazing mothers in the #raredisease community! We understand today may be challenging for many who are in our thoughts. Reach out for help if you need support. Call Lifeline 24-hour Counselling (13 11 14) or the Suicide Call Back Service (1300 659 467).

The revised National Statement on Ethical Conduct in Human Research 2025 was published on 6 Mar, and will take effect and replace the 2023 National Statement from 1 Oct. 📄Read more about RVA's input that was incorporated into the Statement: bit.ly/43h7khu

The World Health Organization (WHO) has just adopted its first-ever Resolution on Rare Diseases. We warmly welcome this development and stand ready to contribute to the 10-Year Global Action Plan this Resolution mandates. Learn more👉 go.eurordis.org/iyFxZd

Janna's story highlights the importance of diagnosis and the uncertainty of disease progression. She also shares her thoughts on healthcare system navigation based on her lived experience. Read Janna's story on RVA's website: rarevoices.org.au/personal-story…

27 May to 3 June is National Reconciliation Week, an opportunity for all Australians to learn about the shared histories, cultures, and achievements, and to explore how each of us can contribute to achieving reconciliation in Australia. Learn more: reconciliation.org.au

RVA Partner, Batten Disease Support and Research Association Australia, is celebrating International Batten Disease Awareness Day on 9 Jun. Batten disease is a rare, fatal genetic disorder that affects children.

The Australian LINEAGE study aims to develop a robust governance framework for the generation and sharing of genomic data in Australia. Read the article: rdcu.be/eqqa3

The RARE Portal has information about individual rare diseases, national and state services, and information for healthcare professionals and rare disease communities for Australia. Visit now: rareportal.org.au

USyd researchers are conducting a research study to understand the preferences that patients, their families/carers and the general public have for different aspects of high-upfront cost gene therapies. For more information: bit.ly/3ZyYJEz

RVA Partner, Fabry Australia is hosting the Annual Lysosomal Disease Summit which will bring together metabolic and lysosomal disease experts from Australia and Asia-Pacific region to address challenges faced. Learn more: lysosomaldiseasesummit.org

Today is International Neonatal Screening Day, which highlights newborn bloodspot screening (NBS) role in access to early diagnosis, timely treatment and a healthy start in life for every child. Learn more about Australia’s NBS programs: health.gov.au/our-work/newbo…

RVA congratulates, Ann Single on her appointment as the President of Health Technology Assessment International. HTAi is a collaboration of HTA professionals dedicated to shaping the future of health systems and improving health outcomes for all people.

Genomics Australia was established to provide national leadership and coordination to better integrate genomics into the health system. Tiffany Boughtwood has been appointed as Australian Health Genomics Commissioner to guide the work. Read more: health.gov.au/our-work/genom…

6-13 July is NAIDOC Week, which celebrates the history, culture and achievements of Aboriginal and Torres Strait Islander people. NAIDOC is an opportunity for all Australians to learn more about Aboriginal and Torres Strait Islander communities. naidoc.org.au

Introducing our new RVA Ambassadors: Natasha, Diane, Archie, Lucy, Lauren and Ryan. RVA welcomes Andrew as an honorary ambassador in recognition of his efforts coordinating the annual Rare Disease Day illuminations and other advocacy work. rarevoices.org.au/rare-voices-au…