Rare diseases can be hard to manage. You may need help from more than one doctor or health professional. This resource provides some tips for finding the right health care team. Your team may include doctors and other health professionals like physiotherapists, occupational therapists and dietitians.

You may still have questions about your care. It is not always easy to get extra help.

Rare disease experts can be hard to find. You may need care from many health providers, and services vary in different hospitals and clinics. You may need to try a few options. The ideas below may also help.

My Health Record can help keep your health information in one place. This can make it easier for your doctors and other health professionals to share information. You can also add notes and ask your doctor to upload important records. Then, if you go to hospital, the emergency department, or use a new health service, ask them to check your My Health Record.

You can find more information about using My Health Record at the Australian Digital Health Agency website.

People with rare disease often need to see different doctors and health professionals such as physiotherapists and occupational therapists as part of their care. They may have many appointments every week, which can be overwhelming. It’s easy to forget to ask about any worries you may have. It may be helpful to record all your appointments and treatments in one place and write down any questions or concerns before appointments. The Healthdirect Question Builder can help you to prepare for appointments.

A general practitioner (GP) who understands your rare disease can help a lot. If you do not have a GP, you can use Healthdirect’s Service Finder to find one near you. You can also use this to find other types of health providers you may need in your team. You can ask your GP or patient support group for their recommendations for allied health professionals or specialists.

When you find a GP, you can share these resources for doctors caring for people with a rare disease to help them give you the best possible care.

Some care options, like the options listed below, may help your GP give you more support.

• Chronic Disease Management Plans can help your GP to work with the other people in your care team. They may also help you get government-funded allied health visits, such as physiotherapy, dietetics, speech pathology, and other therapies.
• MyMedicare may help you get regular care from your doctor. It may also make it easier to have longer or more telehealth appointments.
• Sometimes, the first sign of a rare genetic condition is that a child is not meeting milestones or is losing skills like walking or talking. If you are worried, ask your GP what help is available for complex neurodevelopmental conditions and eligible disabilities. Writing things down to keep a record of anything you are worried about can be helpful. You can also check if there is a free child health drop-in centre in your area.
• If you or a family member has an intellectual disability, ask your GP about the Annual Health Assessment for People with Intellectual Disability. This free check-up can help find health problems early and support ongoing health and wellbeing.
• Living with a rare disease can also have an impact on mental health and wellbeing. You can ask your GP about a Mental Health Treatment Plan. These mental health and rare disease resources may also be helpful.

If you go to a hospital specialist clinic or spend time in hospital, there may be extra support available. You can ask if the hospital has any of these services:

• Complex care, care planning, or discharge support services for people who see multiple specialists, are admitted to hospital often, or need more support at home.
• A hospital social worker if your condition affects your ability to work, study, or manage daily life.
• A patient liaison or patient experience service if you have questions about your care or want to raise a concern.
• A referral to a multidisciplinary team, such as general or internal medicine, a chronic or complex pain service, or a second opinion if your symptoms are not improving.
• A nurse navigator who can help you set up a care plan.
• A process to escalate concerns about care, such as Ryan’s Rule and similar services across Australia and New Zealand. These services are usually for people in hospital.
• If you or a family member live with a disability, your health care providers should make reasonable adjustments for this disability. This resource explains how to get any extra support you need.

Some people with a rare disease choose to see a private specialist because it can be faster to get an appointment, test or procedure, but it is usually more expensive.

Ask your private specialist to develop a care plan and share it with you and your GP. Ask them to put information in your My Health Record so that other health professionals can see any special care you need.

It can take time to find the right care team when living with a rare disease. Many people need more than one opinion before they find the right support.

It can also help to know your rights and how to work well with your doctors. This Top Tips for Safe Healthcare resource explains what to ask, what to expect, and what to do if you are worried about your care.

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