Africa Roadmap

Building clearer pathways to diagnosis and care across Africa

For people living with Gaucher disease, finding the right diagnosis and accessing appropriate care can be challenging.

The Africa Roadmap is a joint initiative of the International Gaucher Alliance (IGA) and A Rare Cause (ARC) designed to strengthen diagnostic pathways and build sustainable networks of expertise across Africa.

The project aims to make it easier for patients and healthcare professionals to identify where to seek appropriate diagnostic and clinical support.

A collaborative approach

The Africa Roadmap uses a network-based approach to connect healthcare professionals, laboratories, patient organisations, advocates and other relevant resources.

The project currently has an established network across eight countries, with opportunities for additional countries to join as appropriate training and governance structures are developed.

The 2025 IGA Impact Report describes the initiative as using a hub-and-spoke model, linking a central laboratory in South Africa with regional centres to support diagnostics, clinical expertise and professional education.

What does the Roadmap provide?

The Roadmap is designed to help people identify:

patient organisations
doctors and clinical experts
laboratories
hospitals
patient advocates
healthcare professionals and
other relevant resources

How does it work?

The interactive Roadmap allows users to:

Choose a category — such as Patient Organisation, Doctor, Laboratory, Hospital or Patient Advocate.
Explore the available resources for that category.
Select a country to see relevant information.
Select a marker to find further details about a resource.

Building sustainable expertise

The long-term aim is not simply to improve access to individual diagnostic tests.

The project is working towards stronger local expertise, sustainable clinical networks and clearer pathways so that patients and families can receive appropriate support closer to home wherever possible.

Be part of the network

The Africa Roadmap is also looking for people and organisations who can contribute relevant knowledge and contacts to strengthen the network.

This may include:

patient organisations
doctors
laboratories
healthcare professionals
patient advocates
hospitals and
other people or organisations involved in rare disease care

Participation is subject to the project’s consent and data-protection requirements.

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