Healthcare professionals: Are you finding it challenging to coordinate effective care for patients with rare diseases when systems don’t connect seamlessly?
Join us as we welcome Janna Linke, Founding Director & Clinical Education Lead Clinical Connective Tissue Disorders Network Australia (CTDNA) and Dr Jason Lam, Specialist General Practitioner & CTDNA Scientific & Medical Advisory Committee Member for this Rare Disease Project ECHO® webinar designed for healthcare providers.
Learn practical strategies for:
Janna Linke, Founding Director & Clinical Education Lead, Connective Tissue Disorders Network Australia (CTDNA).
Janna is a pharmacist, a medical writer, and a Masters of Health Policy Student. Janna lives with Ehlers-Danlos syndrome and brings a robust understanding of the Australia Healthcare System, experience gained from working in both the public health care system and in private clinical practice as a medication review pharmacist.
Janna has a depth of insight into rare diseases that cannot be gained from learning alone, however with a passion for health promotion, policy and evidence based practice; Janna endeavours to never stop learning. Janna holds Graduate Certificates in Advanced Pharmacy Practice, and Management.
Dr Jason Lam, Specialist General Practitioner & CTDNA Scientific & Medical Advisory Committee Member
Jason began his career as a professional dancer and artist before transitioning to medicine after a collapsed lung and a Scrubs marathon inspired a career change. He studied medicine at Flinders University and worked in Plastic Surgery and Dermatology across Northern Territory and New South Wales tertiary hospitals. A neurodivergent philomath, Jason thrives on diagnostic challenges involving complex and difficult-to-diagnose conditions. His lived experience with hypermobility, orthostatic hypotension/POTS, and ME/CFS following septic shock informs his compassionate, holistic approach.
He specialises in Hypermobility, Ehlers-Danlos Syndrome, dysautonomia, Mast Cell Activation Syndrome, FND, and PANS/PANDAS, serving on the Scientific Advisory Board for CTDNA and the Australian EDS and HSD Network. With Fellowship in General Practice, a Diploma of Child Health, Certificate in Practical Dermoscopy, and Master’s of Sports Medicine, he was the inaugural Crichton Dance Medicine fellow with the Australian Ballet and is a registrar with the Australian College of Sport and Exercise Physicians.
The Rare Disease Project ECHO® Clinical Community of Learning Practice is a continuing professional development activity delivered via interactive webinars. The ‘hub-and-spoke’ outreach model connects health providers (‘spokes’) to a multidisciplinary team with expertise in rare disease (‘hub’).
The webinars start with a presentation on a specific topic from an expert. This is followed by reflective discussion, which all participants are encouraged to join.
Rare Disease Project ECHO® is an RACGP-approved CPD activity. However, the sessions are valuable for all health professionals.
Rare Disease Project ECHO® is organised by Rare Diseases NSW (UNSW Sydney; SCHN) and supported by Rare Voices Australia and the Rare Care Centre. It forms part of the RArEST Project, funded by the Australian Department of Health, Disability & Ageing.