Fabry disease is rather easy to test for and diagnose, yet there continues to be limited awareness about the disease. Fabry Australia, a FIN member , is on a quest to place it on the national agenda. Sheridan Campbell explains how her organisation raises awareness.
Challenges
Oftentimes people exhibit symptoms for many years, without anyone, such as a physician, linking them to Fabry. A test is therefore not proposed, and the disease remains hidden. However, if and when a diagnosis is made, family members are more likely to recognise symptoms in others. Fabry can be genetic, and chances are that more than one member of the family is a patient.
The challenge then lies in spreading awareness so that individuals can get access to testing, proper diagnoses and the follow-up care they require. This is precisely where FIN’s strength resides, according to Fabry Australia.
“I value FIN’s information. Especially when I want to get a better idea of what’s happening on that larger world stage,“ says Sheridan Campbell of Fabry Australia
Solutions
Organisations supporting Fabry patients, like Fabry Australia, come together every year in FIN’s Fabry Expert Meeting to build a more robust network. Experts can also attend virtually, so distance is no issue. Collective thinking allows organisations worldwide to grow, share experiences, and improve their knowledge. Together, these organisations create a better future for people with Fabry.
Furthermore, Fabry Australia lobbies for better access to treatment and medical services, which are funded by the government. Fabry Australia has published and submitted a white paper to the Life Saving Drugs Program (LSDP), a government program that funds treatments for rare diseases. The white paper describes the symptoms associated with Fabry disease and what the patient should and shouldn’t do. This data is all backed up with solid research. Fabry Australia advocates for an update of the guidelines in their whitepaper. The government has responded agreeably to this proposal and decided that these guidelines should be updated. Fabry Australia is now waiting for the final decision of the policymakers. With new policies, there is an increased chance that Fabry patients can be better supported in the future.
“Making Fabry disease visible in Google search results as an average disease, is a small victory for us,” says Sheridan Campbell of Fabry Australia
Result
Fabry Australia has a talent for creating and distributing online campaigns. “In 2022, we shared the ‘Cool down Fabry’ campaign from FIN. We also worked together with Optometry Australia, because we wanted to increase the awareness of Fabry disease to the optometrists,” says Campbell. “For International Rare Disease day we also promoted ‘Be rare. Be you’, a campaign by the Canadian Fabry Association.” Sharing these stories gives other organisations a good idea of how to create a successful campaign. “You learn from each other’s wisdom and from each other’s aberrations. Most importantly, the Fabry International Network brings everyone together and forms an international unit.”