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Category: Retinoblastoma

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Retinoblastoma AMCC

AMCC News December 2025

On December 2, 2025, the meeting of the French-speaking GCCA teams for the retinoblastoma program was held in Conakry, Guinea, the day before the start of the annual meeting of the African Francophone Ophthalmology Society (SAFO).

Representatives from 12 French-speaking African countries were present:
- AMCC (2): Laurence Desjardins, Karim Assani
- Ophthalmologists (23): Martial (Porto Novo), Sembela (Pointe Noire), Eric (Ndjamena), Nelly (Maroua), Caroline (Yaoundé), Elvis (Douala), Elien (Bangui), Rokia, Sandrine, and Noelle (Abidjan), Fatou and Aïchata (Bamako), Adam (Niamey), Jenny and Moïse (Kinshasa), Sandra, Junior, and Daudet (Lubumbashi), Joseph and Raihanatou (Dakar), Amouzou (Lomé), Camara and Thierno (Conakry).
- Pediatric oncologists (3): Fousseyni (Bamako), Aissata and Moustapha (Conakry).

This workshop on December 2 focused on patient care, early diagnosis, data collection, and publications.
At the end of the session, recommendations were issued for the year 2026.

On December 4, during the SAFO conference, a symposium on retinoblastoma took place for 1 hour and 15 minutes.

Fatou Sylla and Laurence Desjardins moderated the session.

Nelly Fopoussi, Jenny Yanga, Joseph Ndiaye, and Adam Nouhou Diori presented the management of retinoblastoma in their respective departments and the beginnings of conservative treatment.

At the end of the session, a 6-year-old girl who had undergone enucleation in Bamako for retinoblastoma and was cured with a beautiful prosthesis came with her mother, who recounted her journey.

The room was full, and we had a lot of questions.

Retinoblastoma AMCC

News from the AMCC RB Programme

Training in conservative treatments for retinoblastoma continues with two ophthalmologists from Angola who recently trained in Barcelona (Sant Joan de Déu Barcelona Hospital) in Prof. Jaume Catala's department.

We would like to thank the Théa Foundation, which supports the AMCC in its training programmes and has produced a film documenting the AMCC's work on the retinoblastoma programme, which can be viewed by clicking on the image:

An ophthalmologist from northern Cameroon (Dr Nelly Fopoussi) has just completed her training in the management of retinoblastoma in Tel Aviv (Sheba Medical Centre) with Prof. Ido Didi Fabian.

To enable the trained teams to effectively treat children with retinoblastoma in their countries, a donation of equipment necessary for conservative treatment (diode laser, helmet and cryode) is already on its way to the teams in Luanda (Angola) and Cameroon.

The team in Abidjan, which had already been trained, has received its equipment, which was being repaired, and can now resume conservative treatment of children with RB instead of referring them to neighbouring countries.

In Ethiopia, Senegal and Niger, secondary centres are being set up to bring diagnostic and treatment centres as close as possible to patients and promote the earliest possible diagnosis.

The AMCC's RB programme has been the subject of an international publication, which can be viewed by clicking on the image:

Retinoblastoma AMCC

Retinoblastoma Workshop – LIBREVILLE – 3 December 2024

On December 3, 2024, the fourth workshop on retinoblastoma was held in Libreville with French-speaking teams, following Dakar in 2021, Kinshasa in 2022, and Abidjan in 2023.  The meeting was intended for French-speaking ophthalmologists from the AMCC network and took place at the Jeanne Ebori University Hospital in Libreville, on the eve of the SAFO congress.

RB experts from 11 French-speaking sub-Saharan African countries welcomed the achievements made with the support of the AMCC's RB program over the past five years.

The morning was filled with lively discussions.
We addressed issues relating to data collection and publications with the virtual presence of Dr. Bernard Asselain, a biostatistician who discussed the methodology for moving from data to publication. The AMCC strongly hopes that each team will be able to publish its results in the near future, as this is very important for national and international recognition and the support of potential sponsors.

The afternoon was devoted to early diagnosis programs, with a focus on the need to select affordable measures (in terms of both time and cost) and to repeat these measures every year. Informing parents via social media and the Know The Glow association will also be crucial.

The day ended with discussions about parent associations and all the other actions needed to ensure that local teams take ownership of the program and find the necessary support locally.

In a friendly atmosphere, the workshop was also an opportunity to share memorable moments with colleagues and long-time friends, and to meet and warmly welcome new players in the field of RB in French-speaking Africa.

This workshop was followed by the SAFO conference.

On Thursday afternoon, December 5, the retinoblastoma symposium took place, with this year's theme being conservative treatment experiences in bilateral forms of retinoblastoma. (Prof. Fatou Sylla, Prof. Joseph Ndiaye, Dr. Jenny Yanga, Dr. Adam Nouhou Diori, and Dr. Sandra Iye). The room was full, and there were several questions from the audience. Posters on the early signs of retinoblastoma were distributed to all conference participants.

Well done and thank you to all the speakers.

With our thanks to the organizers of SAFO – Libreville 2024.

Retinoblastoma AMCC

Retinoblastoma Workshop on June 4 and 5, 2024, prior to SIOP Africa in Johannesburg

The meeting was suggested by SIOP, organized and sponsored by AMCC (Karim Assani and Laurence Desjardins), Saint Judes (Susan Ybarra and Matt Wilson, with Nickhill Bhakta and Jacques Van Heerden also in attendance).

The visit by the ophthalmologists was also sponsored by the Eye Cancer Foundation.

The participation of ophthalmologists was remarkable, with English-, French-, and Portuguese-speaking teams (Kenya, Uganda, Ghana, Ethiopia, Nigeria, Ivory Coast, Senegal, Togo, Democratic Republic of Congo, Madagascar, Niger, Cameroon, and Mozambique).

A parallel meeting of pediatric oncologists specializing in leukemia was held, with a joint morning session featuring lectures on implementation science given by specialists from St. Jude: Caitlyn Duffy and Sheena Mukkada.

Several round tables brought together ophthalmologists to discuss issues related to setting up a multidisciplinary team and the therapeutic management of retinoblastoma. A course on conservative treatment by South African ophthalmologist Dr. Hamzah Mustak took place on June 5, as well as a course by Prof. Guillermo Chantada on the ARIA guidelines.

Practical work on implementation was carried out in groups of five to six ophthalmologists, identifying obstacles, defining strategies and techniques for evaluating results, with each team deciding on the issue that it considered to be the most significant obstacle.

Overall, participants greatly enjoyed the two days and left determined to solve their local problems!

The AMCC took advantage of this trip to meet with Dr. Nelly Fopoussi Kouamo, an ophthalmologist from northern Cameroon who sees around 20 new cases of retinoblastoma each year, as well as pediatric oncologists from Angola. Both teams would like to collaborate with the AMCC in the future.

We also met with the WCC (World Child Cancer) team, which works to improve childhood cancer care and with whom we could carry out joint initiatives.

Retinoblastoma AMCC

AMCC Day – SAFO Congress 2023

The SAFO annual conference was held in Abidjan from December 6 to 8.

Before the start of the conference, a working day for the AMCC with the French-speaking teams was organized at the AZALAI hotel.

After Prof Fanny and Dr Desjardins welcomed the participants, the meeting addressed a variety of topics:

RB Program 2019-2028: where are we after almost five years -Prof Fousseyni Traoré 

9:35-9:45 a.m.: Raising awareness of early diagnosis of RB in Côte d’Ivoire: “30-second challenge” -Prof Rokia Bereté, Mr Jean Marie Kouamé

9:45-10:05 a.m.: Late diagnosis of RB: Research protocol on the causes of late diagnosis. -Prof Paule Aida Ndoye Roth

10:35-10:55 a.m.: RB in sub-Saharan Africa: strong involvement of ophthalmologists in multidisciplinary care as a key factor for success. -Prof Fatou Sylla

10:55-11:15 a.m.: Scientific publications on RB in sub-Saharan Africa: current situation, challenges, and opportunities. -Prof Vonor Kokou

11:15-11:45 a.m.: Continuation of the RB program after 2024: each country's vision for the next five years.Healthcare network, parents' association, relations with the Ministry of Health, early diagnosis, and publications -Dr Laurence Desjardins

11:45 a.m.-12:15 p.m.: Five-year RB project: the example of Senegal

2:00-2:45p.m.: Roundtable discussion on "the realities on the ground" of RB enucleation: reminder of its place in the treatment protocol and practical discussions. -Prof Paule Aida Ndoye

2:45-3:30p.m.: Conservative treatment of RB in sub-Saharan Africa: equipment, recruitment of eligible cases, and on-site support for new experts. What does the future hold for the AMCC network? -Dr Adam Diori

3:30-4:00 p.m.: Retino web conference: review since its implementation and thoughts on the future within the AMCC network. -Dr Laurence Desjardins

The next day began with the recording of 30-second challenge videos for the early diagnosis of retinoblastoma at the exhibition.

A prize for the best videos was awarded to the winners at the end of SAFO by Prof Fatou Sylla.

On December 6, a retinoblastoma symposium on healthcare networks was also held.

Retinoblastoma AMCC

ISOO 2022 – Leiden – Netherlands – June 17–21, 2022

Retinoblastoma Day on June 18, 2022.

During this conference dedicated to ocular tumors, Dr Fatou Sylla, Dr Paule Aida Ndoye Roth, and Dr Vera Essuman had abstracts accepted for presentation on retinoblastoma day.

With the support of the AMCC and ISOO, Fatou Sylla and Paule Aida Ndoye Roth were able to attend in person. Unfortunately, Vera Essuman was unable to obtain a visa.

Fatou Sylla and Paule Aida gave oral presentations in English on two occasions.

The ophthalmologists of the ISOO greatly appreciated this and decided to hold the first African ISOO congress in Nairobi in 2025.

Drs Didi Fabian and Kahaki Kimani began laying the groundwork for the organization.

Retinoblastoma AMCC

Meeting of French-speaking ophthalmologists and ocularists – Kinshasa – December 1, 2022

On December 1, 2022, a meeting was held in Kinshasa for all French-speaking ophthalmologists and ocularists involved in the AMCC retinoblastoma program.

This meeting took place at the Hôtel du Fleuve in Kinshasa, Democratic Republic of Congo, just before the start of the SAFO (Société Africaine Francophone d’Ophtalmologie) congress.

During this meeting, we discussed the current situation regarding ocular prostheses. Under the supervision of our prosthetist Allison Louvet from Paris, the prosthetists gathered at the university clinics, where they worked on Thursday and Friday and made prostheses for several children.

We then discussed the involvement of ophthalmologists in the successful and effective treatment of retinoblastoma, the research protocol planned for 2023 on a prospective study into the reasons for late diagnosis of retinoblastoma, the organization of post-treatment monitoring, life after retinoblastoma with testimonials from children who have been cured, early diagnosis actions and programs, data recording in Redcap, and finally conservative treatment and participation in web conferences.

Short videos were recorded of ophthalmologists talking about the early signs of retinoblastoma, which were then shared on social media in different countries.

On Friday, we presented a symposium on retinoblastoma to all SAFO ophthalmologists.

Thanks to Karim Assani and Pierre Bey for organizing this meeting, and to all participants for their active presence and involvement.

Karim Assani, Jenny Yanga, and I then went to Lubumbashi.

On Monday morning, December 5, we met with Professor Gaby Chenge and Dr. Sandra Iye in the operating room of the Lubumbashi University Clinics and were able to examine three children under general anesthesia. One of the children underwent laser treatment for retinoblastoma, which is currently being treated. The cryode was almost operational, but the connection tip needs to be replaced. Thus, the first conservative treatment of retinoblastoma in the Democratic Republic of Congo was performed on December 5, 2022, at the Lubumbashi University Clinics.

Thank you to the entire ophthalmology team and the anesthesiologists.

Retinoblastoma AMCC

ISOO Africa 2023

From August 21 to 23, 2023, the first ISOO congress on African soil was held in Mombasa, Kenya.

This conference, organized by Didi Fabian, Kahaki Kimani, and Laurence Desjardins, enabled many African ophthalmologists and pediatric oncologists to present the current state of retinoblastoma care and discuss current treatments with colleagues from the ISOO.

The event was a huge success, with more than 30 African countries participating, thanks to the support of the AMCC, Saint Jude, Retinostop, the Eye Cancer Foundation, Sheba Global, the Aslan Project, Know the Glow, One Retinoblastoma World, etc.

You can view the proceedings of this conference by clicking on ISOO Africa 2023.

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