Support groups can provide information and support to people living with a rare disease and their families.^1,2,3 Connecting with other people with similar experiences can help overcome feelings of isolation.^3,4

This resource may help people with a rare disease and their families check if groups joined are safe and helpful. Rare diseases are usually very complex and variable. Different people diagnosed with the same rare disease are often affected differently. Each person’s experience is unique. This means information provided by these groups is usually general. Ask your doctor about the most suitable care and support options for you.

They are groups and forums, often led by people living with a specific rare disease or people who care for them. They can include:

• Rare disease organisations such as an incorporated association or company. An incorporated association is a group that is set up by law to do something
• Informal rare disease organisations, usually run by people with a connection to a rare disease
• A Facebook group or another online group
• International support groups

They may differ from group to group but can offer:

• Information and education about a rare disease
• Tips for managing a rare disease
• Personal stories
• Peer support
• Knowledge of available treatment options and specialist clinics
• Information about research opportunities
• Connection to help people who feel alone because of their rare disease
• Help with speaking up for yourself and others
• Help with speaking to people who make decisions about issues relevant to the community
• Support for rare disease research

It is important to check if groups are providing safe and reliable support. Below are some things to look out for:

• Check that any information or advice provided is based on good scientific evidence and clinical expertise. For example, the RARE Portal, the Genetic and Rare Diseases Information Centre and Orphanet
• Check the information or advice with your healthcare team
• Sometimes what people share in these groups can feel overwhelming. Check how you are feeling and take breaks from groups if you feel they are not helping you. Only share things you feel comfortable sharing
• Use tools like turning off notifications to help if you feel it is too much for you
• People in the group usually have the condition themselves or are caregivers. This may sometimes limit how well they, and others in the group, can support you. If you are struggling, talk to your healthcare team about what you need
• Be aware of what you share (for example, photos and personal details) in online groups as it may not stay private. This is especially important if you are sharing information about a child. The ESafety Commission has resources about protecting your child’s privacy online. If a group is not based in Australia, they may not follow the same rules set by governments in Australia. For example, laws about privacy, research ethics, or discrimination (fair treatment for everyone)

• Contact moderators or group leaders
• Report concerns about registered charities or groups collecting donations to the Australian Charities and Not-for-profits Commission
• Most social media platforms have ways of reporting abusive or illegal behaviour
• Leave groups that do not make you feel safe, supported and like you can’t cope well

If you are a peer or community support group leader providing online support, Rare Voices Australia (RVA) has the following training available to RVA Partner organisations (rare disease groups/organisations that formally partner with RVA): RVA Education: Social Media Risk Training

This resource has been co-designed by RVA’s Ambassadors who live with a rare disease, the RARE Helpline team and RVA’s education and advocacy team. Learn more about the team on RVA’s website.