Finding the right health care team is important for people living with a rare disease. It can be challenging to find the right team. Health professionals with knowledge of your rare disease may not be located close to you. People living with a rare disease often need to travel to see someone with knowledge in their condition. Start by asking your local doctor to help you find specialist care.  

The following tips are based on what others living with a rare disease have found helpful. You may need to try several different paths to access rare disease care that works for you and your family. 

• Ask the person/clinic who diagnosed you to refer you to health professionals most appropriate for your rare disease. Many people with a rare disease will have several health professionals involved in their care.  

• A genetic counsellor can help if you have a genetic condition. You can find more information on genetic services here.

• Review rare disease information to identify what types of health professionals usually treat a specific rare disease. Ask your doctor for recommendations and referrals. 

• Use a directory such as the Healthdirect Australia Service Finder to find a provider.  

• Many people with a rare disease may need to see health care professionals at a major hospital. If you need to travel to receive health care, you may be eligible for a subsidy from your state government. A list of services available nationally and in each state or territory is available at the National and State Services and Financial and Practical Supports pages. 

• Many people with a rare disease want to see someone with experience and expertise in their rare disease. This is not always possible due to limited knowledge and expertise about some rare diseases. Finding a health professional who is willing to learn and who you can build trust with is a good option if an expert is not available. Sharing the National Recommendations for Rare Disease Health Care with health professionals can help.  

• Sharing credible information about your rare disease can also be helpful. The How to Find Information About a Specific Rare Disease page lists ways you can find trustworthy information. 

• Check the websites of Australian rare disease organisations to see if they have a directory of health care professionals. Some organisations may have a telehealth or navigation service. The RARE Portal: Rare Disease Directory has a list of rare disease organisations with individual rare diseases. 

• Prepare for appointments by: 

• • Keeping a record of any symptoms or treatment side effects that are worrying you. Here is an example of a simple template you can use to keep a record. Some rare disease organisations may also have a template you can use.  

• • Writing down any questions you have before the appointment. This Question Builder can help you to think of questions to ask your health professionals. 

• It is common for people with a rare disease to seek multiple opinions. If you feel unsure or have unanswered questions, it may be helpful to get another opinion. 

• Having a good understanding of your health care rights can be helpful.  

If you have tried these options, Healthdirect Australia has a 24-hour advice line you can contact: 1800 022 222. 

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