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NEWS

ASEAN+ Rare Disease Network Established

Date: March 24, 2017

The first ASEAN+ Rare Disease Network has been established, bringing together patient support groups from across Southeast Asia (Singapore, Malaysia, Indonesia, the Philippines and Vietnam) and Hong Kong. The mission of this Network is to better understand the needs of rare disease patients and their caregivers in the region, in order to identify areas for improvement and mobilize community involvement and humanitarian solutions. Rainbow Across Borders (RAB), a regional patient support group alliance, served as a catalyst towards the establishment of this Network.

Survey: 60% Of Patients With Rare Disease Did Not Know What They Are Suffering From

Date: March 24, 2017

Translated from Lianhe Zaobao (Online)
The survey found that patients seeking diagnosis were often faced with doctors’ lack of knowledge of the disease, difficulty in finding specialists, inability to draw conclusions from the medical tests, and other challenges. Some people have even taken 30 years to know what disease they have.
The newly established ASEAN+ Rare Disease Network held a press conference the day before yesterday to share the data on the survey of the effects of rare diseases on patients and caregivers in Singapore. The organization will conduct similar surveys in other countries and regions.

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

Date: July 01, 2016

Rainbow Across Borders will be embarking on an impact 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.

Together In One Voice

Date: April 11, 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

Date: March 11, 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.

Ten Patient Empowerment Projects win accolade from Sanofi-Rainbow Across Borders Asia Pacific Award

Date: October 16, 2015

SINGAPORE - Today, results of the Sanofi-Rainbow Across Borders Asia Pacific Award, the first award of its kind in Asia and the Pacific region, was unveiled at the Partners in Patient Health Asia Pacific Forum 2015 in Singapore, recognizing 10 outstanding initiatives by patient advocates and groups (PAG) for their efforts to empower patients to improve their health and achieve better outcomes.

Working in One Voice: A New Beginning

Date: October 16, 2015

SINGAPORE - It was an evening of promising beginnings: of friendships made, commitments pledged, and journeys embarked upon together.

Inevitable, when rare disease stakeholders comprising patient organisations, physicians, social workers and pharmaceuticals with the same concerns and hopes came together to engage with and learn from one another at Working In One Voice, an event organised by Rainbow Across Borders (RAB).

Encouraging support: Sanofi teams up with Rainbow Across Borders to launch Asia Pacific′s first award for patient groups

Date: May 16, 2015

Sanofi has joined hands with Rainbow Across Borders to launch the Sanofi-Rainbow Across Borders Asia Pacific Award, the first award of its kind in the region to recognise patient groups for their vital role in helping and empowering patients.

Fly me to the wound

Date: May 15, 2015

MALAYSIA - The sight of maggots squirming about is enough to get some people retching. But as strange as it sounds, these fly larvae have proven to be great assets in the medical world.

Empowering the ill through patient advocacy

Date: May 08, 2015

At some point in time somewhere in this world, there are gatherings bother small and large of people that are shaping the world in their own ways. One such gathering was held at the Swisshotel Singapore recently.

To the uninformed, the meeting would have seemed peculiar. There was a blind man with his Labrador guide dog, members of the Women Union of Vietnam, a nutritionist from Thailand, and a group belonging to a large pharmaceutical company.

It was the Sanofi Asia Pacific Patient Leaders Roundtable, featuring patient leaders discussing the importance of patient advocacy, and how they can improve it.

Sanofi teams up with Rainbow Across Borders to launch Asia Pacific′s first award for Patient Groups

Date: April 28, 2015

Singapore - Today, Sanofi joined hands with Rainbow Across Borders to launch the Sanofi-Rainbow Across Borders Asia Pacific Award, the first award of its kind in the region to recognise patient groups for their increasing role in helping and empowering patients.

Rare diseases get an airing at Asian conference

Date: March 23, 2015

SINGAPORE - Coordinated by patient support organisation Rainbow Across Borders, the two-day event was a platform for patients with rare diseases, their family members, medical experts and professionals to share their experiences and put together practice guidelines.

Taiwan news article

Date: March 22, 2015

Inaugural Rare Disease Asia Conference 2015 launched to raise awareness of conditions

Date: March 11, 2015

SINGAPORE - The first Rare Disease Asia Conference 2015 was launched on Thursday morning at the Concorde Hotel Singapore. The event was organised to promote awareness of rare diseases, as well as foster regional ties between countries. The conference was attended by 25 patient care groups and over 24 participants from 13 countries, including Japan, Vietnam, Australia, and Singapore.

Healthcare boon for kids with rare diseases

Date: March 01, 2015

SINGAPORE - Relief and hope. That is what MediShield Life, which kicks in by the end of this year, means to children with rare diseases and their families.

Vessel tour to cheer ′em up

Date: December 24, 2014

MALAYSIA - Malaysian children suffering from rare diseases and their family members enjoyed a day touring a luxurious cruise ship during the Rainbow Across Borders networking event.
The event was organised by Club Rainbow (Singapore), a registered society that provides support for the families of children who suffer from major chronic and life-threatening illnesses.
Royal Caribbean Cruises (Asia) collaborated with Club Rainbow for this event as part of their corporate social responsibility initiative to sponsor a tour of the ship and three-course lunch for close to 5 Malaysian guests.

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