Human Variome Project

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The Human Variome Project is an international non-governmental organisation that is working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared freely and openly.

21/09/2026

Happy Retirement, Datuk Dr. Nor Fariza Ngah 💐

The Human Variome Project (HVP) extends our sincere appreciation and warmest wishes to Datuk Dr. Nor Fariza Ngah, Deputy Director-General of Health (Research & Technical Support), Ministry of Health Malaysia, on the occasion of her retirement.

We are deeply grateful for her visionary leadership, unwavering support and dedication to advancing genomics and healthcare in Malaysia. Her recognition of the importance of genomics and continuous efforts to champion its development have contributed significantly to strengthening genomic research and promoting better healthcare in our country.

We sincerely appreciate her support for our mission and her commitment to fostering meaningful collaborations within the scientific and healthcare communities. Her contributions to the advancement of genomics and precision medicine will continue to inspire our efforts towards improving healthcare through genomic knowledge and research.

As she embarks on this new chapter, we extend our heartfelt gratitude for her invaluable contributions and wish her continued success, happiness and good health in the years ahead.

Thank you, Datuk Dr. Nor Fariza, for your dedicated service, visionary leadership and unwavering support. We wish you a happy and fulfilling retirement.

13/09/2026

CARDIOGEN 2026: Where the Heart Meets the Genome

We are pleased to share CARDIOGEN 2026, Malaysia’s Inaugural Cardiovascular Genetics Course, jointly organised by the Department of Genetics, HOSPITAL KUALA LUMPUR (HKL), Malaysian Society of Clinical Genetics and Genomics (MSCGG), and College of Paediatrics, Academy of Medicine of Malaysia (AMM).

📅 5–6 November 2026
📍 T.J. Danaraj Auditorium, Academy of Medicine of Malaysia, Putrajaya
🏅 CPD points awarded

Under the theme “Where the Heart Meets the Genome,” this two-day course will explore how genetics is transforming modern cardiology, bringing together insights from cardiology, clinical genetics, genetic counselling, molecular diagnostics, inherited cardiac conditions and precision cardiovascular care.

Participants can look forward to high-impact lectures, case quizzes, clinical dialogue and the Heart Mystery Challenge, covering topics such as cardiomyopathies, inherited arrhythmias, molecular autopsy, congenital heart disease, heritable aortopathies, genetic testing and genetic counselling in cardiovascular genetics.

🔗 Register here:
https://lnkd.in/gBjcqDNi

📩 Enquiries: [email protected]
⏳ Early bird registration: until 12 October 2026
📌 Registration closes: 1 November 2026

We warmly invite healthcare professionals, scientists, genetic counsellors, medical officers and students interested in the growing intersection between cardiovascular medicine and genomics to join this exciting event.

10/09/2026

Upcoming Webinar: Shaping the Future of Genetic Counseling Globally

The HUGO Genetic Counselling Standing Committee invites genetic counselors and interested professionals to an upcoming webinar:

“Who Are We & What Do We Do? Your Voice in Shaping the Genetic Counseling Profession Globally”

The session will explore the importance of defining the shared values, purpose, and identity of the genetic counseling profession across diverse roles and settings worldwide. It will also provide an opportunity for genetic counselors to contribute their perspectives and help shape the future direction of the profession.

🎙️ Speaker: Chinmayee B Nagaraj
Genetic Counselor, Cincinnati Children’s Hospital, USA
PhD Candidate, University of Technology Sydney, Australia

📅 Date: 7 October 2026
🕕 Time: 6:00–7:00 PM (GMT+8)

🔗 Registration:
[https://utsmeet.zoom.us/meeting/register/w0dblBEQSKGsEZUWhi3B0Q]

We encourage our colleagues and members of the genetics and genomics community to join the discussion and share this opportunity with others who may be interested.

03/09/2026

The EduVariome Programme, initiated by the Malaysian Node of the Human Variome Project (MyHVP), was established to promote awareness of human genetics and inherited disorders through education and community engagement as part of efforts to strengthen genetic health awareness in Malaysia.

Beginning in 2014, the programme reached secondary schools across the state of Kelantan, focusing particularly on thalassaemia awareness and the importance of pre-marital genetic screening. From 2014 to 2018, EduVariome reached 25 schools across the districts of Kota Bharu, Bachok, Kuala Krai, Tanah Merah and Machang.

In December 2016, the programme was also held at Universiti Malaysia Kelantan (UMK), bringing together approximately 200 undergraduate students for a forum on pre-marital genetic screening and thalassaemia.

Through educational talks, forums and interactive activities, EduVariome aimed to empower young people with knowledge about genetic disorders and encourage greater awareness of thalassaemia prevention.

We hope initiatives such as EduVariome will continue to inspire a deeper understanding of genetics, promote informed health decisions and empower future generations to contribute to a healthier society, not only in Malaysia but around the world.

30/08/2026

Global Globin 2020 Challenge Conference 2017

Launched by the Human Variome Project (HVP) in 2014, the Global Globin 2020 (GG2020) Challenge was established as a global initiative to strengthen capacity, collaboration and knowledge sharing in human genetics and genomics, with a particular focus on haemoglobinopathies such as thalassaemia and sickle cell disease.

Since its launch, GG2020 brought together the international haemoglobinopathy community through conferences held in Kuala Lumpur, Malaysia (2017), Penang, Malaysia (2018), and UNESCO Headquarters, Paris, France (2019).

The 2017 GG2020 Challenge Conference, held on 17–18 July 2017 at Impiana KLCC Hotel, Kuala Lumpur, centred on the theme “Moving Towards Zero Thalassaemia.” It followed the annual GG2020 meeting held at the same venue on 16 July.

The annual meeting brought together GG2020 members and representatives from nine countries, with discussions focusing on future projects, international collaboration and the development of the GG2020 Thalassaemia Kit. The conference that followed featured presentations and discussions covering thalassaemia epidemiology, prevention, guidelines, ethics, education and emerging areas such as stem cell therapy.

The conference featured 15 speakers from nine countries, including Malaysia, Indonesia, Singapore, Thailand, India, Italy, Cyprus, Egypt and Pakistan. The programme also featured 42 e-posters, providing opportunities for researchers and healthcare professionals to share their work and knowledge with the international haemoglobinopathy community.

With Prof. Dr. Zilfalil Alwi serving as Chairman of the GG2020 Conference, the Kuala Lumpur meeting provided an important platform for strengthening international partnerships, sharing expertise and advancing collaborative efforts in thalassaemia research, prevention, education and genomic medicine.

HVP was proud to initiate and support the GG2020 Challenge, bringing together partners and experts across borders in the shared pursuit of genomic medicine for clinical benefit and the goal of moving towards zero thalassaemia.

Note: GG2020 Challenge is now known as the Global Globin Network (GGN).

27/08/2026

Global Globin 2020 Challenge Conference 2018

Launched by the Human Variome Project (HVP) in 2014, the Global Globin 2020 (GG2020) Challenge was established as a global initiative to strengthen capacity, collaboration and knowledge sharing in human genetics and genomics, with a particular focus on haemoglobinopathies such as thalassaemia and sickle cell disease.

Since its launch, GG2020 brought together the international haemoglobinopathy community through conferences held in Kuala Lumpur, Malaysia (2017), Penang, Malaysia (2018), and UNESCO Headquarters, Paris, France (2019).

The 2018 GG2020 Challenge Conference, held on 7–8 July 2018 in Penang, centred on the theme “Precision Medicine in Thalassaemia.”

The two-day programme brought together experts from Malaysia and around the world, with sessions covering gene therapy, molecular diagnostics, translational genomics, prevention and screening, G6PD deficiency, sickle cell disease, and thalassaemia management.

The programme featured distinguished speakers including Professor Sir John Burn, Professor Dr. Antonio Piga, Professor Emeritus Dr. Suthat Fucharoen, Dr. Carsten Lederer, Dr. TP Baskaran, and Dr. Michael Angastiniotis of the Thalassaemia International Federation, alongside many other experts and contributors from across the international haemoglobinopathy community.

With Prof. Dr. Zilfalil Alwi serving as Organising Chair, the conference provided a platform for discussions on translational genomics, international partnerships and knowledge sharing, highlighting the importance of collaboration in advancing precision medicine and improving outcomes for populations affected by haemoglobinopathies.

HVP was proud to initiate and support the GG2020 Challenge, bringing together partners and experts across borders in the shared pursuit of genomic medicine for clinical benefit.

Note:
GG2020 Challenge is now known as the Global Globin Network (GGN).

24/08/2026

Looking Back: Global Globin 2020 Challenge Meeting and Conference 2019

The Global Globin 2020 (GG2020) was an initiative under the Human Variome Project (HVP), established in 2014, aimed at strengthening the global collection, consolidation and sharing of genomic data related to haemoglobinopathies, including thalassemia.

The initiative sought to bring together genetic and clinical information from diverse populations, helping researchers and healthcare professionals better understand genetic variation, disease phenotypes and differences across ethnic groups, while supporting greater access to genomic information.

As part of this initiative, the GG2020 Challenge Meeting and Conference 2019 was held from 28–30 October 2019 at the UNESCO Headquarters in Paris, France, under the theme “Enhancing Partnership in Genomic Capacity and Equitable Healthcare.”

The meeting brought together around 80 researchers, scientists, healthcare professionals and experts from different backgrounds, featuring plenary lectures, scientific symposia, oral presentations and posters.

A key outcome was the rebranding of GG2020 as the Global Globin Network (GGN), strengthening international collaboration in globin research and genomic healthcare.

📍 UNESCO Headquarters, Paris, France
📅 28–30 October 2019

GG2020 has since evolved into the Global Globin Network (GGN), continuing its mission to foster global collaboration, data sharing and advances in genomic healthcare for haemoglobinopathies.

20/08/2026

Looking back at the history of the Human Variome Project (HVP), we are reminded that this international initiative has been shaped by the vision, commitment and contributions of many remarkable individuals and teams over the years.

The journey began with Professor Richard Cotton, the founder and pioneer of HVP, whose vision brought together an international community with the official launch in Australia in 2006, committed to improving the understanding and management of human genetic variation.

The development of HVP was also made possible through the dedicated contributions of many others. David Abraham AM played an important role in establishing the original HVP Board, while Chris Arnold AM played a significant role in developing the international Board and served as Executive Chair from 2014 to 2017. His leadership helped strengthen HVP’s engagement with UNESCO and World Health Organization (WHO), and contributed to the establishment of important international partnerships.

Following Dick’s passing in 2015 the Project continued to evolve under the leadership of Professor Sir John Burn, with HVP moving to the United Kingdom in 2017 under Sir John’s chairmanship.

We also gratefully acknowledge the contributions of Julia Hasler, Helen Robinson, Heather Howard, Rania Horaitis, Timothy D Smith and the wider HVP administrative and international community, whose commitment and behind the scenes efforts were essential to sustaining the Project and supporting its growing global membership.

Following the transition of HVP leadership and the relocation of the Secretariat from Melbourne to Newcastle, and subsequently to Malaysia, the Project has entered a new chapter under the leadership of Professor Zilfalil Alwi.

Today, HVP continues to build on this collective legacy by promoting collaboration in human genetics, genomic medicine and capacity building, particularly in LMICs.

The history of HVP is therefore not the story of any single individual, but of a shared vision sustained by many people across different countries, institutions and generations.

As we look to the future, may HVP continue to grow from strength to strength, honouring the contributions of those who built its foundations while creating new opportunities for collaboration, innovation and equitable access to genomic medicine across the Global South.

16/08/2026

Honouring a Remarkable Journey with HVP

HVP extends its sincere appreciation to Dr. Julia Hasler as she steps down from the HVP Board following many years of dedicated service and commitment.

Dr. Julia has been part of the HVP journey since its early days, dating back to the Melbourne meeting in 2006. Throughout the years, her contributions have played an important role in the development of HVP, particularly in strengthening the relationship between HVP and UNESCO.

Her support, guidance and commitment have contributed meaningfully to HVP’s growth and continued development. While we are saddened to see her leave the Board, we celebrate her remarkable contributions and wish her a fulfilling and joyful retirement.

Thank you, Dr. Julia, for being an invaluable part of the HVP family. Your contributions, experience and wisdom will always be remembered and appreciated.

Wishing you a wonderful retirement and every happiness in this next chapter.

15/08/2024

Title: Boundaries in Genetics.
A lecture series by Prof. Zilfalil Alwi from the Human Genome Centre, USM.

Address

Kota Bharu
16150

Telephone

+6097676531

Website

https://www.hugo-international.org/human-variome-project/

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