Events Search and Views Navigation

Event Views Navigation

Today

Unlocking Tomorrow’s Treatments Today: Navigating Clinical Trials and new Therapies for Your Rare Disease Patients

Clinical trials and advanced therapeutics offer hope for rare disease patients, but navigating access can be complex. Join this essential webinar to understand the pathway to cutting-edge treatments for your patients. Learn practical strategies for: Identifying appropriate clinical trials for rare disease patients Understanding the clinical trial process and eligibility criteria Accessing advanced therapeutics and […]

Whole-Person Care: Practical Mental Health Tools for Rare Disease Patients and Families

Living with a rare disease profoundly impacts mental health and wellbeing for both patients and their families. Join this practical webinar to gain evidence-based tools for supporting the psychological needs of your rare disease patients, including those with intellectual disability. This webinar will also mark the launch of a new RACGP-approved educational resource designed to […]

Rare Disease Day 2026: Care, Connect, Cure

UNSW Health Translation Hub 55 Botany Street, Randwick, NSW, Australia

Care, Connect, Cure is a free, inaugural hybrid event hosted by Rare Diseases NSW, Genetic Alliance Australia, and Belongside Families, bringing together researchers, clinicians, policymakers, industry, patient advocates, and families to advance rare disease care and research in NSW and beyond.   Held over two days in Sydney with online participation available, the event will explore innovation […]

Circular logo with the words “My Health Choices My Way” in teal on a light background, featuring stylised handprints of different sizes underneath to represent young people and inclusivity.

My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability

Online

When young people with intellectual disability turn 18, they have to move from children's health services to adult health services. This is called a health care transition, and for many young people, it goes badly wrong. Support can disappear overnight. Doctors don't always share information with each other. And the new system is often not […]

Graphic promoting a GenoCare forum titled “A new approach to reproductive carrier screening support”, scheduled for Thursday 23 April, 12 pm to 1 pm. The background is blue with white text and logos of Genetic Alliance Australia, Syndromes Without A Name, and GSNV shown at the bottom.

RareNET April 2026 Forum

Online

The GUARD Collaborative's RareNET forum presents Associate Professor Ali Archibald, Genetic Counsellor and Co-Founder of GenoCare in conversation with Monica Ferrie, CEO, Genetic Support Network Victoria. This forum will explore GenoCare’s integrated model of genetic testing, counselling, and embedded mental health support designed around the real experiences of individuals and families navigating uncertainty, diagnosis, and […]

Promotional graphic for the “National Research Symposium 2026,” featuring a large dark panel with the event title, the date “Wed, 13 May,” and the word “online,” surrounded by a collage of photos showing people participating in talks, panels, and video calls.

National Intellectual Disability Health Research Symposium 2026

Online

The National Centre of Excellence in Intellectual Disability Health (NCEIDH) is proud to launch the National Intellectual Disability Health Research Symposium 2026. This symposium will bring together researchers from across Australia who want to improve the health of people with intellectual disability. The event is an opportunity for people to connect and share ideas. Topics […]

Promotional poster for the documentary You Look Fine. A black-and-white close-up portrait of a person looking directly at the camera appears against a dark background. The film title, YOU LOOK FINE, is displayed in large red text beneath the portrait, with the subtitle “A J. Snow Documentary” above it. Awards and selections are featured at the top of the poster, including the Audience Award and Jury Award for Best Unstoppable Feature at the 2026 Slamdance Film Festival, and Official Selection for the Sydney Film Festival 2026. The striking image conveys the themes of resilience, visibility and the hidden realities of living with chronic illness, including Sickle Cell Disease.

You Look Fine – Sydney Film Festival Premiere

Dendy Cinemas Newtown 261 King Street, Newtown, NSW, Australia

Rare Diseases NSW is pleased to share the Sydney Film Festival premiere of You Look Fine, a compelling documentary exploring the realities of living with Sickle Cell Disease. Sickle Cell Disease is a rare inherited blood disorder that affects millions of people worldwide. While symptoms may not always be visible, people living with the condition […]

$27.50

Illustrated banner for the Discipline of Paediatrics and Child Health Research Seminar Series, featuring children, healthcare professionals, medical research imagery and the UNSW Sydney logo.

Research Seminar: From Childhood Dysbiosis to Adult Malignancy – Understanding the Cystic Fibrosis Gut

UNSW Health Translation Hub 55 Botany Street, Randwick, NSW, Australia

Join the Discipline of Paediatrics & Child Health Research Seminar for an engaging presentation by Dr Josie van Dorst, Senior Postdoctoral Researcher in the Gastrointestinal Research Laboratory at UNSW Sydney. As people with cystic fibrosis (CF) are living longer, gastrointestinal complications are becoming an increasingly important part of long-term health. Dr van Dorst will explore […]

2026 Prader-Willi Research and Family Conference banner featuring the theme “Pathways Forward: Where Hope Ignites Innovation,” held 28–30 August 2026.

2026 Prader-Willi Research and Family Conference

Brisbane Airport Conference Centre 2 Dryandra Rd, Brisbane Airport, QLD, Australia

The 2026 Prader-Willi Research and Family Conference, Pathways Forward: Where Hope Ignites Innovation, will be the landmark event of the year for the Prader-Willi Syndrome (PWS) community. Hosted by the Prader-Willi Research Foundation Australia (PWRFA), the conference will bring together researchers, scientists, clinicians, families, and the wider disability and rare disease community. Across three inspiring days, the program will […]

Promotional flyer for the GeneEQUAL Webinar, hosted by the UNSW Disability Innovation Institute. The webinar features researchers and representatives from disability, genetics, family, and advocacy organisations. The event celebrates the launch of new co-produced resources, including Social Stories about attending genetic medical appointments, the World’s First Easy Read Booklet about intellectual disability written by people with intellectual disability, and a podcast series titled Growing Stronger Together: People with Intellectual Disability, Families and Support People Navigating The World. The webinar takes place on 10 September at 12 pm. The flyer includes speaker headshots, images of the resources, a podcast image, and a QR code for registration.

Made Together, Stronger Together: Launching GeneEQUAL’s new codesigned resources

Online

Join the GeneEQUAL Inclusive Research Team and the Disability Innovation Institute UNSW to celebrate the launch of new resources made with people with intellectual disability, their families and support people. We will launch: Growing Stronger Together, a podcast series featuring people with intellectual disability, their families, support people and advocacy groups sharing their experiences navigating […]

Free