UNIKIN at the Heart of the First African Workshop on Rare Diseases

Published on 29/08/2026

From August 24 to 27, 2026, Kinshasa hosted the First African Rare Diseases Clinical and Genomic Workshop, an initiative spearheaded in particular by the Center for Human Genetics of the Faculty of Medicine at the University of Kinshasa. This international gathering brought together clinicians, geneticists, bioinformaticians, and experts to focus on strengthening skills in the diagnosis and management of rare diseases in Africa.

Welcome by Professor Prosper LUKUSA

President of the Congolese Society for Human Genetics and Head of the

Centre for Human Genetics

Professor and Rector of the University of Kinshasa,

Professor and Dean of the Faculty of Medicine of UNIKIN,

Professor and Medical Director of the University Hospitals (CUK),

Professor and Medical Director of the Centre for Neuropsychopathology

(CNPP),

Mr. President of the National Board of Physicians of the DRC

Professor and Head of the Department of Pediatrics,

Professor and Head of the Neonatology Department,

Professors and Dear Colleagues,

Ladies and Gentlemen Trainers and Participants in this workshop, from

various backgrounds,

Distinguished Guests, to your respective ranks and titles.

It is my great pleasure to welcome you to this African Rare Disease Clinical &

Genomic Workshop that is organized from today by the Reference Center for

Rare and Undiagnosed Diseases (CRMRND) of our Center for Human

Genetics, Faculty of Medicine, University of Kinshasa.

Initially, the Congolese Society of Human Genetics had been designated to

organize this year 2026 in Kinshasa the annual Congress of the African

Society of Human Genetics (AfSHG), with a very broad focus including clinical

genetics in Africa, rare and complex diseases, genetics of infectious diseases,

bioinformatics, etc.

Unfortunately, due to limited sponsors sponsorship, this congress was

rescheduled for the year 2027. Instead, we instead initiated this Workshop,

in a smaller format, dedicated to the various clinical and genomic aspects of

rare diseases in Africa.

The objective here is to gather and disseminate the expertise and skills in

rare diseases, with a view to training a chain of practitioners in standard

protocols for precise diagnosis, which can pave the way towards more

specific and personalized care.

In the DRC, we have set up a network on Rare Diseases covering most of our

provinces. This network is in permanent and weekly contact with better

trained experts who work at our Reference Center for Rare Diseases here in

Kinshasa. With this network, patients encountered across the country are

evaluated collegially from the anamnesis, clinical description, diagnostic

hypotheses, technical exploration, therapeutic management envisaged to

counselling.

My colleagues who supervise the various focal points of this network will be

able to tell you more about it.

I would just like to take this opportunity to congratulate them and express

my admiration for the perseverance and diligence they show week after

week.

We are going to live together 4 days fully dedicated to rare diseases. I am

convinced that all participants to this workshop will be able to share their

experience with us, and in turn be enriched by all the exchanges we will have

together.

The detailed program of these 4 days is available online. You will be

reminded of it gradually. Some adjustments may be made as needed.

My hope is that this program will allow us to improve the diagnostic

approach and the efficiency of the management of rare diseases in African

populations.

Before I turn over the microphone, I would like to thank our guests here for

the time they have devoted to this meeting.

1. Special thanks to the Rector of UNIKIN, Professor Jean-Marie Kayembe

Ntumba, for his availability and the encouragement he has always

given us since the creation of our Reference Center for Rare Diseases

2. A big thank you to Professor Ntsambi Glennie, Dean of our Faculty of

Medicine, for his presence and support of this activity.

3. A huge THANK YOU also to Prof Makulo JR, Medical Director of our

University Clinics who facilitated us, beyond our expectations, the

granting of our current work premises.

4. Thank you very much to the National President of the Order of

Physicians of the DRC, Dr. Nsadi Berthier, for his spontaneous support

and contribution to the sponsorship of this activity.

5. Many thanks also to Professor Thérèse Biselele, Head of the

Department of Pediatrics, for her unreserved support for all our

scientific and/or clinical initiatives. She would have liked to be with us

today, but she has to preside over another meeting within her

department.

6. I would also like to thank the UNIKIN Cooperation Cell who supervised

us for several practical aspects of the organization of this meeting here

at the Elais Center.

7. A special thanks to the sponsors: Roche, Illumina, and the National

Board of Physician, And our partners: the African Society for Human

Genetics, Genetic Alliance and Codon One. Without you, there would be

no African Rare Diseases Clinical and Genomic Workshop

To all, a big thank you.

I would now like to invite the Professor and Rector of UNIKIN to proceed with

the official opening of this WORKSHOP.

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UNIKIN at the Heart of the First African Workshop on Rare Diseases

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