Francesca Granata: Representing the Porphyria Community at the 79th World Health Assembly
Francesca Granata, Health Researcher and Contract Biologist at Milan Polyclinic Hospital, shared a post on LinkedIn:
“Yesterday, I had the honour of attending the 79th World Health Organization Health Assembly at the headquarters of the World Health Organization as a delegate of the International Porphyria Patient Network and Vivi Porfiria, taking part in the official side event dedicated to the implementation of Resolution WHA78.15 on skin diseases as a global public health priority.
‘From Resolution to Action’ represented an important moment in the ongoing development of a Global Action Plan on skin diseases, bringing together institutions, clinicians, patient organisations, and advocates from all over the world in a truly international and solution-oriented environment.
Many porphyrias involve severe and disabling cutaneous manifestations that still remain under-recognised and insufficiently represented within broader dermatological and public health discussions.
At the same time, some forms of porphyria involve symptoms that are not visible, and this invisibility often leads to pain being underestimated, under-recognised, and undertreated.
For this reason, ensuring that porphyria is included in these conversations is extremely important for our community.
As both a patient and a researcher at Ospedale Maggiore Policlinico seeing all these perspectives come together feels like the beginning of a new era of medicine — one where patients stand alongside science, not behind it.
It was also personally meaningful to reconnect with friends and fellow advocates met throughout these years of advocacy work.
Moments like these remind us how essential international collaboration, human connections, and patient advocacy truly are in ensuring that no rare disease community remains invisible.
A sincere thank you to Jennifer Austin and all GlobalSkin – International Alliance of Dermatology Patient Organizations, and the WHO for creating a space dedicated to dialogue, collaboration, and concrete action for patients worldwide.”
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