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ED in the Media


radio interview

Gloucestershire Hits Radio InterviewJune 2022

News Articles

Mc Donalds boys richard and lennon

Hannah Harpin and Rachel Stewart-Illingworth are battling to fight stigmaYorkshire Post May 2022

Soaring inflation could be worse for the sector than the Covid-19 pandemic, charities warnedThird Sector May 2022

Breakthrough in research for Ectodermal DysplasiaCharity Today January 2022

Why the heatwave can be a nightmare for people with this rare diseaseWales Online August 2018

Brothers aged 5 and 6 have rare condition which causes their hair, teeth and nails to grow abnormallyOctober 2015



Tayen, Rarity Life Magazine, Acceptance is a hot topic June 2022

The Fragility with Beauty, Hannah Harpin Rarity Life MagazineFeb 2022


Social Media


Medics for Rare Diseases (M4RD) featured Ectodermal Dysplasia on #MysteryMondayApril 2022

Charity Today Column

As official Charity partners of UK Charity Week campaign, we are super excited to announce the ED Society will now hold a monthly column spot.

Breakthrough in Research – February 2022

Small UK Charity Celebrating – December 2021