CONTACT
Meet the stories of those living with a rare disease or complex condition, their caregivers and families. This section includes a collection of stories from people who have generously shared their experiences of living with a rare disease, and their connection to the support and expertise of the different European Reference Networks (ERNs).
Would you like to share your own experience? Contact us at dissemination@jardin-ern.eu
Patient stories
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February 06th, 2026LARA’S STORY
ERN RARE-LIVER. ERN on hepatological diseases
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February 06th, 2026MAGDALINI’S STORY
ERN RARE-LIVER. ERN on hepatological diseases
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February 06th, 2026ANTONIJA’S STORY
ERN RARE-LIVER. ERN on hepatological diseases
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February 06th, 2026CHAYENNE’S STORY
ERN RARE-LIVER. ERN on hepatological diseases
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February 05th, 2026ANNEMARIE’S STORY
ERN Skin. ERN on skin disorders
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February 05th, 2026KARIN’S STORY
ERN Skin. ERN on skin disorders
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February 04th, 2026IVANA’S STORY
ERN CRANIO. ERN on craniofacial anomalies and ENT disorders
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February 03rd, 2026LORRAINE’S STORY
ERN GUARD-Heart. ERN on uncommon and rare diseases of the heart
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February 03rd, 2026EVA-MARIA’S STORY
ERN EURACAN. ERN on adult cancers (solid tumours)
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February 02nd, 2026CÉLINE’S STORY
ERN GUARD-Heart. ERN on uncommon and rare diseases of the heart
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February 02nd, 2026RUTH’S STORY
ERN GUARD-Heart. ERN on uncommon and rare diseases of the heart