Stay informed and connected
Keep up with rare disease news, events, resources, research and opportunities to participate.
Use our sign-up form to choose the information and opportunities most relevant to you. You can subscribe to general updates, join a community, register a research interest or tell us more about your connection to rare disease.
You can also follow our latest work through the Rare Diseases NSW LinkedIn feed below.
Ways to connect
You can select one pathway or several. The sign-up form lets you choose what you would like to hear about and how you may want to participate in the Rare Diseases NSW community.
Receive Rare Diseases NSW updates about research, resources, events, education, advocacy and opportunities across the rare disease community.
Join healthcare professionals, researchers, people and families, advocates, policy makers and health-system leaders sharing knowledge and building collaborative responses.
Register your interest in student-focused rare disease learning, professional connection and opportunities to contribute to research, projects and community activity.
Tell us which Rare Diseases NSW research projects and co-design opportunities interest you. RarePower helps connect people with lived experience to research from the beginning.
Sign-up form
Complete your contact details, select the updates and communities that interest you, and tell us about any research opportunities you would like to hear about. You can choose one option or several.
Complete the required contact fields. Organisation, position, phone and website details are optional.
Choose any combination of news, communities, student activities and RarePower research interests.
Select only what is relevant to you. You can return later and submit the form again when your interests change.
Stay connected
Tell us a little about yourself and choose the Rare Diseases NSW news, communities and projects you would like to hear about. Select as many options as are relevant to you.
LinkedIn updates
Explore recent Rare Diseases NSW posts, including project updates, new resources, events, research, partnerships and opportunities to participate.
See new guides, tools, research updates and Rare Diseases NSW announcements.
Find upcoming events, registrations, learning activities and opportunities to contribute.
Learn about members of the rare disease community and the partnerships supporting shared progress.
The posts below are supplied through the existing Elfsight LinkedIn feed. Select a post to continue reading or interact with it on LinkedIn.
Contact & privacy
Contact Rare Diseases NSW about our work, resources, partnerships, events, research or opportunities to participate. You can also use this section to update your communication preferences or find more information about privacy.
Email us with questions about our programs, resources, events, research, education, partnerships or ways to get involved.
rarediseasesnsw@unsw.edu.auAdd a new subscription, community or research interest through the sign-up form. To stop receiving a particular email stream, use the unsubscribe or preference link in the relevant email.
Your information
The information you choose to provide is used to respond to your enquiry, manage your subscriptions and connect you with the updates or opportunities you have selected. This page also uses third-party services to deliver the mailing-list form and social-media feed.
You choose which contact details, interests and optional information to provide through the form or by email. Only provide information relevant to the purpose of your enquiry or subscription.
The sign-up form and mailing-list preferences are delivered through Mailchimp. Subscription emails include links that allow recipients to manage preferences or unsubscribe.
The embedded social feed is supplied through Elfsight and displays LinkedIn content. Opening or interacting with a post may take you to LinkedIn, where LinkedIn’s own privacy terms apply.