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ENGAGING IN ADVOCACY

For more inclusive social policies.

ENERGIZING AWARENESS

Of the needs of families of patients who battle chronic or life-threatening illnesses.

EMPOWERING PATIENT SUPPORT ORGANISATIONS

Through appropriate programmes and services.

ENABLING ACCESS

To information on optimal treatment options, care and support for chronically ill patients and their families.

Rare Disease Day 2017: Balik Kampung

Rare Disease Day 2017: Balik Kampung

Held at the Enabling Village on 26 February 2017 and organised by Rare Disorders Society (Singapore). At the event, RAB will present findings from Hearts, Hopes & Aims: A Singapore Rare Disease Impact Study, in line with the international Rare Disease Day 2017 theme ‘Research’, and slogan “With research, possibilities are limitless”.

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

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

In conjunction with International Rare Disease Day 2017, RAB shares the Hearts & Hopes of the Singapore Rare Disease Patients and their Caregivers. This impact study aims 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.

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Inaugural Asia Pacific Lung Health Summit: A Patient′s Perspective

Inaugural Asia Pacific Lung Health Summit: A Patient′s Perspective

This event will be held on 14 - 15 October 2016 in Singapore. This Summit aims to connect patient leaders who work tirelessly for Lung Health in their home country, allowing them to exchange and network, share experiences and coordinate views for the region.

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Rare Disease Asia Conference 2016: Working In One Voice

Rare Disease Asia Conference 2016: Working In One Voice

17 - 19 November 2016, Kuala Lumpur, Malaysia. Themed “Working In One Voice”, the second Rare Disease Asia Conference will bring together stakeholders of the rare disease community in Asia and beyond.

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Together In One Voice: Rare Disease Day 2016

Together In One Voice: Rare Disease Day 2016

Together in One Voice will bring together members of the rare disease community in Singapore. This event hopes to raise awareness on rare diseases and their impact on patients’ lives. Join us in making the voice of rare diseases heard!

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PRINCIPLES OF HAEMOPHILIA CARE - A PATIENT′S PERSPECTIVE

PRINCIPLES OF HAEMOPHILIA CARE - A PATIENT′S PERSPECTIVE

This roundtable event aimed to connect experts in Haemophilia care and patient advocate leaders; allowing them to exchange and network, share experiences and coordinate views on the Principles of Haemophilia Care.

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RAB CAPABILITY SURVEY

RAB CAPABILITY SURVEY

This survey assessed the needs of 51 patient support organisations from the Asia-Pacific region and determined the best practices to be shared amongst them. The questions were designed to gauge organisational effectiveness in the areas of accountability, governance, trust and public profile.

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Working in One Voice

Working in One Voice

Working in One Voice, organised on 16 October 2015, was an evening which brought together patients, medical social workers, patient support organisations, physicians, medical professionals and pharmaceutical companies to share their views on the landscape of chronic illness and rare disease in the region.

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REGISTER AS A RAB AFFILIATE

REGISTER AS A RAB AFFILIATE

Rainbow Across Borders (RAB) is Asia′s first regional patient support group alliance. RAB aims to empower patient support organisations through appropriate programmes, services and training, while facilitating learning and experience exchange among the RAB affiliates.

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IDIOPATHIC PULMONARY FIBROSIS

A Community Project by Rainbow Across Borders and Boehringer Ingelheim. Pulmonary fibrosis (PF), the most common type of interstitial lung disease, is characterised by thick and stiff tissue that turns into scar tissue over time. Because of the increasing presence of scar tissue in the lungs, the organ is not able to properly transport oxygen into the bloodstream. When the blood does not get enough oxygen, symptoms result including shortness of breath; persistent, dry and hacking cough; fatigue; unexplained weight loss; aching muscles and joints; and clubbing of the fingertips.

LATEST HIGHLIGHTS

The most recent articles about Rainbow Across Borders and our events organised in partnership with our affiliates.

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.

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