[ASC-media] New global initiative launched to address genetic blood disorders

Timothy Smith tim at variome.org
Mon Mar 16 18:00:24 PDT 2015


*New global initiative launched to address genetic blood disorders*

Kuala Lumpur, 17 March 2015—Patients with one of a number of devastating
genetic blood disorders, such as thalassemia and sickle cell anaemia, will
benefit significantly in the coming years from a new international project
announced today at the annual Human Genome Organisation meeting in Kuala
Lumpur. The Global Globin 2020 Challenge (GG2020), an initiative of the
Human Variome Project—an international scientific NGO working with UNESCO
and WHO to build medical genetics and genomics capacity, particularly in
low- and middle-income countries—will apply recent developments in human
genomics involving the systematic collection and sharing of genetic
variation data to fighting these blood disorders, referred to technically
as haemolytic anaemias.

In particular, the Challenge will build an evidence base for the better
management of delivery of local treatment, care and eventually cure for
these diseases by ensuring that there is sufficient local capacity to
deliver services. It is believed that the Challenge will put in place the
skills and expertise in genomic medicine needed to effectively tackle other
health issues in these countries as well.

The Challenge is being led by two leading geneticists, Professor Zilfalil
bin Alwi from Malaysia and Professor Raj Ramesar from South Africa. Both
are members of the Human Variome Project Board and can see the benefits
this project will bring to their patients and others in South East Asia,
Africa and the rest of the world.

Human Variome Project International (HVPI) Chairman, Chris Arnold, who
chaired the HUGO session introducing the project, thanked the GG2020
challenge co–chairs and fellow HVPI directors, Professor Zilfalil Bin Alwi,
from Universitie Sains Malaysia and Professor Raj Ramesar from the
University of Cape Town South Africa for their leadership and willingness
to coordinate this major global initiative. Mr Arnold stated “The
haemolytic anaemias collectively, are cause for significant morbidity and
mortality, especially in parts of the world where health systems are often
less well developed. Children are often most severely affected. Despite
much being known for a long time about the genetics and biology of the
haemolytic anaemias and this knowledge being used successfully in some
countries to systematically reduce burden of disease, low- and
middle-income countries have remained practically untouched by this
knowledge and innovations.”

In launching the Challenge, Professor bin Alwi said, “The Malaysian Node of
Human Variome Project is honoured to be given the privilege to co-chair
this Global Globin Initiative. Hemoglobinopathy, in particular
Thalassaemia, is a common disease in Malaysia where about 5% of the
population are carriers of the disease".

Helen Robinson, a global health consultant from the Nossal Institute for
Global Health at the University of Melbourne who worked on the development
of the Project for the Human Variome Project said, “Commitment to
systematic variant data collection is increasing, but this is occurring
mostly in high income countries where much of the diagnosis and testing
takes place. There is a risk that countries where the burden of these
diseases is highest—low- and middle-income countries—are being left behind
in a form of ‘genomic divide.’ The capacity to generate quality data on
variants, to store it so that it can be shared internationally needs to be
built in these countries. ”


*About the Human Variome Project*

The Human Variome Project is an international consortium of heath care
professionals, researchers and policy makers that are committed to the idea
of free and open sharing of genomic variation information. Our members come
from over 80 countries and from every region of the world. Individually and
together, they are working to establish the standards, systems and
infrastructure to ensure that the knowledge and insights into our genome
gained in their own countries are shared in a responsible manner with every
other country.
The Human Variome Project acts as an umbrella organisation across multiple
countries, institutions and initiatives. It works to encourage
communication and collaboration around it central vision—the improvement of
global health through the sharing of genomic knowledge.
[image: Human Variome Project]Timothy D. SmithCommunications Officer Human
Variome ProjectLevel 5, 234 Queensberry StreetThe University of Melbourne,
Victoria, 3010AustraliaTel: +61 (0)3 8344 2096Fax: +61 (0)3 9347 6842Skype:
tim_d_smithMob: +61 (0)419 357 589E-mail: tim at variome.orgWeb:

Connect with us: [image: See the Human Variome Project on YouTube]
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Join the global effort to share genomic knowledge and reduce disease by
becoming a member of the Human Variome Project Consortium. Membership is
free and open to everyone with an interest in helping patients with genetic
disease. Join now at http://www.humanvariomeproject.org
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