📢 Attention Australians Living with Central Disorders of Hypersomnolence (CDH) ie: Narcolepsy, Idiopathic Hypersomnia, and Kleine-Levin Syndrome (KLS) – and Their Supporters!
We need your support! 💬 Did you know that Australia does NOT have a patient registry for Central Disorders of Hypersomnolence (CDH), including narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome? A national registry is critical to improving research, raising awareness, and developing better treatments for these debilitating conditions.
The time for action is NOW! We’re asking the Australian Federal Health Minister to provide $50,000 in funding to lay the foundation for a national CDH patient registry. And we need your support to make it happen. This $50,000 in funding would support:
✅ Initial database development
✅ Secure data storage
✅ Outreach to healthcare providers and patients to ensure widespread participation
✅ Collection of an initial dataset as a proof-of-concept, strengthening future applications for larger funding opportunities (e.g., NHMRC) to support the expansion and long-term sustainability of the registry
Here’s how YOU can help:
📝 Simply sign our letter of support to the Australian Federal Minister for Health, Mr. Mark Butler. We will add this letter of support with your signature to our request for funding.
Why is a national CDH Patient Registry so important?
A patient registry is an essential tool for improving outcomes for individuals with CDH. It provides a centralised database that collects, analyses, and organises information about patients, which is crucial for:
Facilitating Research: A registry enables researchers to identify trends, develop new treatments, and better understand the natural history of CDH. This is especially important as current treatment options remain limited and are currently insufficient.
Informing Public Health Policy: Reliable data is critical for developing evidence-based policies and allocating resources effectively.
Enhancing Patient Care: A registry allows healthcare providers to better track disease progression and tailor interventions to individual needs.
Driving Awareness and Advocacy: Accurate data can raise awareness among policymakers, healthcare professionals, and the general public about the significant burden of these disorders.
You have until midnight on Wednesday 5th March 2025 to add your signature to our letter of support. Please share this link https://forms.gle/C4hN9eJTR2UKdbQd9 with your supporters so they can add their voices too!
💪 Thank you for helping us help you!