The International Gaucher Alliance (IGA) is the global voice of Gaucher Disease patient groups, Gaucher patients, and their carers. The IGA is a patient-led international organisation that has become the ‘go-to’ global voice for over 90% of the Gaucher community, building its reputation by listening to and delivering outcomes that have positively impacted patients’ and their carers’ lives. It began as the European Gaucher Alliance in 1994 and became a worldwide organisation in 2018. To date, we have 59 member associations representing 55 countries throughout the world. Our vision is a world where all Gaucher patients have the best possible quality of life and access to the treatment and care they need, looking forward to the development of a cure.
Registered Charity Number: 1192011
A Rare Cause: We believe that families and patients affected by a rare disease shouldn’t have to leave their country to get the best healthcare. By training healthcare professionals and patient advocacy groups in rare diseases, we can keep families together and support healthcare professionals in helping their patients. Our mission is to invest in education to empower healthcare professionals, patients, and advocacy groups. We do this by creating educational programmes and providing necessary resources in Low- and Middle-Income Countries, turning ‘on the ground’ healthcare professionals into experts. A Rare Cause, the charitable arm of FYMCA Medical LTD, has continued the foundations laid with FYMCA (https://www.fymcamedical.com/)-trained clinicians and laboratory staff, patient organisations, medical support, DBS cards for samples, and support for distribution into a formal collaborating network.
England and Wales registered Charity nr: 1198461
The Africa Roadmap
The core purpose of this project is to improve diagnostic services for patients with rare diseases in Africa.
Results from the Pilot Project:
● FYMCA-trained clinicians and laboratory staff
● Patient organisations and medical support
● DBS cards for samples and support for distribution
● Positive outcomes: 56 samples processed, 22 positive diagnoses, and 3 patients with charitable drug access.
Goal: To build on the pilot project, develop the diagnostic network, and create an African roadmap to diagnosis.
Current Network: An established network with knowledge and logistics in 8 countries. Additional countries can join with appropriate training and governance structures.
It all starts and ends with the patient. When patients need help, they usually go to a hospital or a patient organisation. From there, they need to be referred to the appropriate centre or laboratory that can provide a diagnosis. Currently, this can be very challenging, but this project aims to make the process much easier for everyone. We want to develop a clear roadmap of where to refer patients for diagnosis, saving time and improving the patient’s journey.
Once the roadmap has been developed, we want to reach out and share it with everyone who treats patients. To do this effectively, we need your consent to include your name and contact details, allowing us to share this information with others who would also like to be involved.
We’re looking for individuals and groups to become a part of this vital network. Your involvement could include providing relevant contacts for the roadmap and/or sharing this initiative with others who may be interested in joining. You can be a:
● Contact person
● Patient organisation
● Doctor
● Laboratory technician
● Patient group
● Patient advocate
● Healthcare worker
We are committed to GDPR compliance and require your consent to collect and share your details within the network. Please complete the form below to get involved and provide your consent.
Consent form link:
This section is dedicated to sharing the latest developments, insights, and stories from the rare disease community across Africa, particularly as they relate to our project. Here, you’ll find a growing collection of:
Stories and Interviews:
Real-life experiences, conversations with patients, healthcare professionals, advocates, and key stakeholders.
Articles, Publications and Posters:
Scientific research, awareness campaigns, programmes, and in-depth analyses:
Newsletters and reports:
Regular updates on our progress, project updates, and the wider rare disease landscape in Africa.
We believe that comprehensive education is crucial for empowering patients, carers, and healthcare professionals. This section provides direct access to a wealth of trusted educational materials on Gaucher Disease, hosted on our main International Gaucher Alliance webpage.
Explore our resources, including:
● Videos: Informative and engaging visual content explaining various aspects of Gaucher Disease.
○ Supporting Mental Health:
■ Supporting your community’s mental health needs
■ Mind your Mind – Let’s talk about our mental health
○ Wellness for Gaucher disease patients:
■ Wellness for Gaucher disease patients (Subtitulado en español)
● Webinars: Expert-led discussions and presentations on diagnosis, treatment, and living with Gaucher.
○ First In ternational Gaucher Day Lecture 2024:
The first annual International Gaucher Day Lecture
○ Gene Therapy Trials, June 2024:
GT Webinar June 2024
○ Biomarkers in Gaucher disease:
Biomarkers in Gaucher disease
● Leaflets and Brochures: Downloadable materials offering concise and essential information.
○ The Power of Knowledge in a Timely Diagnosis leaflet