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- Knowledge of rare diseases among healthcare professionals is lacking:
o 34% do not know if there is a definition for rare diseases
- o 35% do not know if there is a national rare disease policy
- 14% of healthcare professionals report never encountering a rare disease patient
- Better coordination between disciplines and across borders is needed to ensure every rare disease patient receives the best care available
HONG KONG, CHINA – Media OutReach – 16 July 2020 – There are between 6,000 and 7,000 known rare diseases, which share little in common beyond their infrequency. This represents both a medical and policy challenge, often resulting in those with rare diseases receiving suboptimal support. While individual diseases may be rare, their collective burden is significant. The Economist Intelligence Unit estimates that around 258 million people across Asia-Pacific are affected by rare diseases. While rare diseases are increasingly moving up the health policy agenda in Asia-Pacific, more work is needed to provide people with rare diseases the support they need.
The Economist Intelligence Unit report, Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific, sponsored by CSL Behring, describes healthcare professional’s experiences around rare diseases–measured in a regional survey of over 500 people–and reviews policy responses in five economies: Australia, China, Japan, South Korea and Taiwan.
The research found that healthcare professionals do not feel adequately equipped with the knowledge or tools to diagnose and manage rare diseases across all economies, and obtaining a correct diagnosis within a reasonable timeframe is the greatest challenge. Fragmentation of care is another critical issue. Healthcare professionals reported that only one-third of rare disease patients receive the best-available care, and lack of clinical practice guidelines, regulatory-approved medicine and funding for testing or treatment were the reasons cited for why not. Finally, the provision of support for quality of life, autonomy and rights was the weakest aspect of care provision, according to survey respondents.
Policy responses to more comprehensively address rare diseases are emerging across the region, but are hampered by lack of comprehensive data on the incidence and prevalence of rare diseases and a lack of a unified rare disease definition. Meanwhile, the establishment of national undiagnosed disease programmes in some economies has demonstrated the power of increased collaboration and a multi-disciplinary approach to addressing the core issues around diagnosis and patient care. Currently-achievable or near-term goals identified by the research include better collection and use of data, enhanced education, broader dissemination of available knowledge and integration of patient care through increased national or international collaboration.
Jesse Quigley Jones, editor of the report said: “Despite the clear challenges in addressing rare diseases in Asia-Pacific, there appears to be slow and steady progress towards coordinated and integrated care. Adopting a holistic policy approach that makes provision for both the medical and social needs of the rare disease community–and doing so in collaboration with patient representatives–has the potential to make a real difference in this area.”
About the research
Suffering in silence: Assessing rare disease awareness in Asia-Pacific is a report by The Economist Intelligence Unit. It describes the results of a survey conducted in November-December 2019 of 503 healthcare professionals and in-depth interviews with 16 experts from across five Asia-Pacific economies: Australia, China, Japan, South Korea and Taiwan. Survey respondents comprised specialist physicians, general practitioners, nurses and pharmacists.
About The Economist Intelligence Unit
The Economist Intelligence Unit is the world leader in global business intelligence. It is the business-to-business arm of The Economist Group, which publishes The Economist newspaper. The Economist Intelligence Unit helps executives make better decisions by providing timely, reliable and impartial analysis on worldwide market trends and business strategies.
About CSL Behring
CSL Behring is a global biotherapeutics leader driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, respiratory disease, and neurological disorders. The company’s products are also used in cardiac surgery, burn treatment and to prevent hemolytic disease of the newborn.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL;USOTC:CSLLY), headquartered in Melbourne, Australia, employs more than 26,000 people, and delivers its life-saving therapies to people in more than 70 countries. For inspiring stories about the promise of biotechnology, visit Vita CSLBehring.com/vita and follow us on Twitter.com/CSLBehring.
NAIROBI, KENYA – Media
OutReach – 15 July 2020 – Syinix will
be launching its first Android TV in Kenya at 10.30 pm, 15th July 2020.
The Launch will be on NTV and Startimes Kenya and hosted by Size 8 Reborn. With
the launch, Syinix will explain to customers in detail what the Syinix A20
series has to offer.
The Syinix A20 series has 32”, 43”, 50” and 55” screen. Here is a sneak
peek of what the Syinix A20 series has to offer.
Syinix defines new android TV
Syinix will offer 12+12 warranty on new Syinix Android TV and within those 2
years the customers will receive free repair service from Carlcare. The aim is
to ensure that there is interaction with customers in order to answer
questions, resolve supporting issues, improve credibility, and build stronger
relationships with the clients.
The new Android TV is now compatible with Google Assistant, you can quickly
find and play your favorite shows, get answers and control your home. The
Bluetooth-enabled TV will allow you to use external speakers to get better
sound. Comes with the Chrome cast built in feature, the TV allows one to stream
your favorite shows, movies, music, sports, games, and more from your mobile
device to the big screen.
It also offers breathtaking quality with the HDR advanced image processing
technology, that can better reflect the visual effect in real environment and
let users see richer and more realistic colors. The other goal of the HDR is to
maintain as much of the original image quality as possible, all the way through
to the living room.
The aesthetically pleasing television with its frameless structure shows the
success of Syinix Android TV being the first true frameless television. The Syinix
Android TV has a screen to body ratio of 96% for a larger and more optimal
viewing experience and has a very thin bezel at the bottom.
The new Syinix Android TV as you can tell has much to offer to the customers.
To provide further value to the customers, Syinix is partnering with Carlcare, to
provide first-class-after sales services anytime, anywhere.
Syinix constantly focused on providing top quality products and services to
Kenyan families. Syinix Android TV is developed to provide the most affordable
price and user-friendly technology for every member of the family to enjoy
entertainment and better quality of life.
Futurist addresses post-COVID-19 issues at E-Day online platform
KONG, CHINA – Media OutReach –
15 July 2020 – In light of the COVID-19 situation, this year’s HKTDC
Entrepreneur Day (E-Day) has undergone a transformation in terms of format
and content, with a series of seminars being broadcast live on 16 and 17 July. The
public can register for free at https://hktdc.hermeslive.com/en/.
HKTDC Assistant Executive Director Stephen Liang
said: “Start-ups have been bearing the brunt of the unprecedented challenges,
such as the impact on capital flow, brought by the COVID-19 pandemic. However,
the new normal has given rise to business opportunities through the use of pioneering
Mr Liang added that this year’s E-Day, under the
theme “Revive‧Redefine“, highlights
the practical and inspirational aspects of start-ups that can help to ensure
the survival, growth, transformation and sustainability of the current business
ecosystem in the face of significant changes and challenges, while promoting
the agility necessary to embrace future challenges. The seminars feature more than 30 heavyweight speakers
from such fields as smart logistics, education technology and biotechnology to
share how to deploy pioneering ideas and innovative technologies to disrupt existing
industries and tap into new markets.
into the future of entrepreneurship
be joined by Gerd Leonhard, a futurist who will address the audience
from Switzerland tomorrow (16 July) to shed light on emerging issues in the post-COVID-19
economy and future trends in such areas as business, society and governance in
the context of exponential technological progress. Mr Leonhard will share how the
future of jobs, work and commerce is being redefined amid the challenges and
transformation brought about by the pandemic; examine the role of innovation,
creativity and entrepreneurship in creating major breakthroughs in a
technology-dominated future; and look at what start-ups and entrepreneurs can
do to be future-ready. He will be joined by Karena Belin, CEO &
Co-Founder of WHub, Dr Toa Charm, Associate Professor, Business
School, the Chinese University of Hong Kong, and Herbert Chia, Venture
Partner at Sequoia Capital China, to discuss how COVID-19 will shape
decision-making for start-ups, incubators and venture capitalists in Hong Kong
Gerd Leonhard, CEO of The Futures Agency
seminar tomorrow, titled From Crisis to Chances will examine how
entrepreneurs are able to turn challenging situations into opportunities,
offering inspiration to the audience. Highlighting Hong Kong’s research
excellence and the city’s experience in containing the COVID-19 outbreak,
Professor Yeung King-lun from the Hong Kong University of Science and Technology
will share how his team reacted to the challenges presented by the global
pandemic to develop a smart anti-microbial coating, the Multilevel
Antimicrobial Polymer (MAP-1) coating, to control infectious diseases.
Designed for use on different surfaces including wood, glass, metals, concrete,
plastics, fabrics, leathers and textiles, the coating provides lasting
protection and surface disinfection against microbial contamination for a
period of up to 90 days. The smart coating has already been applied in more
than 70 day-care centres, homes for the elderly, kindergartens and primary and
secondary schools. In addition, Professor HC Man, Dean of the Faculty of
Engineering at Hong Kong Polytechnic University, will share on how his team
launched the General Use Face Shield to provide enhanced protection for
the public and minimise the risk of virus transmission within the community.
opportunities are also arising for start-ups in fields such as fintech, smart
city and education technology. Katherine Cheung, Chief Marketing Officer
of on-demand online tutoring platform Snapask, will share on how recent social
distancing measures have unleashed opportunities for the Hong Kong-based
start-up in both local and overseas markets. Founded five years ago, Snapask is
now serving over 3.2 million students with more than 350,000 tutors across
eight Asian locations — Hong Kong, Taiwan, Singapore, Malaysia, Indonesia,
Thailand, Japan and Korea. The start-up has registered an increase of 1.3
million users over the past 12 months, including a big surge due to the
suspension of classes amid the COVID-19 pandemic. In Hong Kong, the platform
currently has some 40,000 tutors and 200,000 active users, most of whom are
high school students with a high percentage of them preparing for the Hong Kong
Diploma of Secondary Education examination. Some parents also seek advice while
helping their primary school kids with their homework. Understanding the demand
from students studying late at night, Snapask has pushed the boundaries of
traditional tutoring to offer a 24-hour service. Apart from its app, Snapask is
also developing business-to-business (B2B) solutions using AI technology to
provide personalised learning resources through big data analysis.
industries with pioneering ideas
event’s plenary session tomorrow morning, titled Revive‧Redefine,
William Ip, Managing Director of Carousell Hong Kong, and Crystal Pang,
Co-Founder of Pickupp, will share how their start-ups are working to redefine
their respective industries through pioneering ideas. Mr Ip will share how the company has promoted
the concept of a “sharing” future through its customer-to-customer (C2C)
marketplace. Ms Pang will introduce how the start-up is redefining the
delivery industry and expanding its business in the Asian market. Pickupp also
works with genetic testing and digital health company Prenetics to
provide a door-to-door saliva specimen collection service for patients
who need to undergo COVID-19 testing.
In addition, the newly
launched Enterprise Connect series, featuring Arup, Epson and Fung
Group, will showcase how enterprises can join hands with start-ups to
create shared value and revive businesses across different industry pillars.
from the media are welcome to join the closed-door seminars, which will be held
at S226-228 at the Hong Kong Convention and Exhibition Centre. Details are as
July (Day 1)
Plenary Session: Revive‧Redefine
William Ip, Managing
Crystal Pang, Co-founder,
From Crisis to Chances: Unleashing
Professor Yeung King-lun, Department of Chemical
Professor HC Man, Dean, Faculty of
Katherine Cheung, Chief Marketing Officer,
T-Chat — Futurising Your
(Exclusive online broadcast
Gerd Leonhard, CEO, The Futures Agency
Karena Belin, CEO & Co-Founder,
Dr Toa Charm, Associate Professor,
Herbert Chia, Venture Partner, Sequoia Capital
Please click here for details of all seminars over
both days of E-Day.
Photo 1: For the first time, a
Photo 2: William Ip, Managing
Photo 3: Katherine Cheung, Chief
press releases in Chinese, please visit http://mediaroom.hktdc.com/tc
Kong Trade Development Council (HKTDC) is a statutory body established in
1966 to promote, assist and develop Hong Kong’s trade. With 50 offices
globally, including 13 in Mainland China, the HKTDC promotes Hong Kong as a
two-way global investment and business hub. The HKTDC organises international
missions to create business opportunities for companies, particularly small
and medium-sized enterprises (SMEs), in the mainland and international markets.
The HKTDC also provides up-to-date market insights and product information via trade
reports and digital
news channels. For more information, please visit: www.hktdc.com/aboutus.
Follow us on Twitter @hktdc and LinkedIn
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