Rare Disease Day is commemorated internationally to raise awareness on rare diseases and their impact on patients’ lives. The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in working and influencing change that improves their lives and the lives of their families and caregivers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

Together in One Voice will bring together members of the rare disease community in Singapore. This includes rare disease patients, as well as all who support them – caregivers, physicians, allied healthcare professionals, patient support organisations, pharmaceutical representatives and health officials.

We believe that your coming together will enhance the care and management of the many rare disease patients and their families. For this reason, we have designed the multi-colour handprint logo to symbolize the co-active relationship of the five main groups of stakeholders in caring for rare disease patients.

There will also be an exhibition of photographs of rare disease patients in their daily journeys, which is aimed at raising public awareness of rare disease in Asia. More than 10 organisations from seven countries are involved in this project.

What’s in store:

• Fun and creative activities for kids & youth
• Focus group sessions for patients & caregivers
• Photo exhibition World Through My Eyes

Pledge your support for the patients’ voice!

Event Photos

Newsletter: Together In One Voice