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PUBLICATIONS

Hearts, Hopes and Aims: The Singapore Rare Disease Impact Study

Illness Group: Rare Disease
Publication Date: 28 Feb 2017

Hearts, Hopes and Aims: The Singapore Rare Disease Impact Study, is a comprehensive study to better understand the needs of rare disease patients and their caregivers in Singapore, with the intention to identify areas for community involvement and humanitarian solutions. This study will provide insights into the lives of the patients in Singapore, particularly their challenges and dreams.

With this, we will be able to bring together the many stakeholders in rare disease management to catalyse strategic solutions for the management and care of rare disease patients and their families. We believe that with our concerted effort, we will be that much more effective.

Together In One Voice

Illness Group: Rare Disease
Publication Date: 11 Apr 2016

In commemoration of Rare Disease Day 2016 on 28 February at Gillman Barracks, Singapore.

The coming together of 10 rare disease groups marked this years event. It was attended by 200 patients and their caregivers, as well as physicians, allied healthcare professionals, patient support organisations, pharmaceutical representatives and policy strategists from Singapore. Other event highlights include a kids′ play session at Playeum, the launch of World Through My Eyes - a regional photo exhibition and a focus group discussion for rare disease patients and caregivers.

Haemophilia Care: A Patient′s Perspective

Illness Group: Haemophilia
Publication Date: 11 Mar 2016

About one in 10,000 people are born with haemophilia. Most are not diagnosed and do not receive treatment. Standards of haemophilia care also differ widely across countries in Asia. We would like to change that.

Rainbow Across Borders brought together haemophilia patient groups from Thailand, Malaysia, Vietnam and Singapore at the Principles of Haemophilia Care Round Table Meeting in January. The aim was to discuss the Souther East Asian Principles of Haemophilia Care suggested by the Asia Pacific Haemophilia Working Group.




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