Charity and Advocacy

Jul 23

Advocacy Corner: Lea Jabre

We asked stiff person syndrome advocate, Lea Jabre, to share her tips about life with a rare disease.

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May 16

Necrotising enterocolitis (NEC) and its long-term complications: Lakevia Ward’s experiences

Lakevia Ward shares her “bittersweet life” living with the long-term effects of necrotising enterocolitis (NEC)

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Apr 25

Undiagnosed Children's Day: a puzzling rare disease journey

For Undiagnosed Day, Marlene Soto, founder of Helping SWANS, tells us her experience of endlessly searching for a diagnosis for her son, AJ.

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