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Alexandra Heumber Perry—Global
4 min read
It is time to shift the paradigm on rare diseases
It’s time to make rare diseases a global health priority and ensure that people living with rare diseases are not left behind.


Maurizio Arseni—Global
8 min read
AI transforming rare diseases diagnosis and care
AI is revolutionising rare disease research by bridging data gaps and enabling faster diagnoses and more effective treatments.


Trudy Nyakambangwe—Zimbabwe
6 min read
Challenges and opportunities for genomics in Africa
Genomic testing in Africa would benefit from more awareness and a national registry of patients living with rare diseases across Africa.


Zarina Geloo—Zambia
8 min read
Uganda takes action to ease sickle cell disease burden
In Uganda, sickle cell disease burdens families with social isolation and high costs. Growing awareness offers hope.


Prasanna Shirol—India
4 min read
Designing a collaborative care system beyond caretakers
Rare disease patient management must include providing both long-term support for patients and peace of mind for families.


Becky McCall — Global
7 min read
The forgotten social and emotional toll of rare diseases
People with rare diseases face stigma, isolation, and neglect. Addressing social and emotional impacts is crucial for better support.


Hannane Ferdjani—South Africa
8 min read
South Africa’s fight for fair rare diseases healthcare
In South Africa, rare disease patients struggle for diagnosis and care. While resources are limited, advocacy groups push for reforms.


Christhyl Ceriche—Chile
5 min read
Finding strength through innovation and inclusion
Assistive technology and inclusion in the workplace can drive independence for people with rare diseases.


Danny Buckland—Global
7 min read
How lived experience powers rare disease advocacy
Innovative collaborations are helping rare disease patient groups campaign for change and training medical students to be advocates.


Junu Shrestha—Global
4 min read
Bringing rare eye diseases into focus
Rare eye diseases are often overlooked. Integrating rare disease and eye health initiatives ensures access to universal care.


Paul Adepoju — Nigeria
8 min read
The new frontier of genomic testing for rare diseases
Genomic technology is revolutionising the diagnosis and treatment of rare diseases. The next step is ensuring equitable access.


Christine Mutena—Kenya
4 min read
Advancing rare disease advocacy in Kenya
Significant strides have been made to bring advocacy and engagement on rare diseases from Kenya to the global stage.
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