The purpose of the databases is to facilitate communication with healthcare providers, connecting with others, and providing newly diagnosed families a place to start.
Our mission is to make it easier to find relevant support groups and rare disease professionals, including information and resources about rare diseases. Developed with consumers from the community including health professionals and those with lived experience of a rare disease, the vast majority of contributors agreed that they believed it would be beneficial for health care professionals and individuals with lived experience to have access to such a database and that it would help promote awareness of conditions, link healthcare professionals with support groups where they could provide information and support and contribute to a more holistic approach to healthcare. Other benefits include:
- Providing access to timely information for clinicians and consumers
- Promote awareness of rare conditions and available supports
- Save time and minimise stress of finding support for the newly diagnosed
- Allow support groups to connect with each other
- Connect people with reliable sources of information
- Provide broader information and statistics to demonstrate resource needs when applying for funding
- Encourage a more holistic approach to healthcare by encouraging clinicians to consider the condition and support needs more globally
If you have any questions, comments or concerns please email firstname.lastname@example.org.
Support Group Self Nomination
Self-nomination list for support groups who want to be added to the database
Provider & Professional Self Nomination
Self-nomination for healthcare providers and other rare disease professionals