Rare Resilience during the Pandemic

Rare Resilience during the Pandemic

Today’s guest blg is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook group.  Here Polly gives a perspective on the pandemic from someone with Mal de Debarquement...
Rare disease spotlight: EB 2020

Rare disease spotlight: EB 2020

Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress.

Danny’s fortnight at Findacure

Danny’s fortnight at Findacure

In this week’s blog, we would like to introduce you to our new volunteer, Danny de Vries Robbe. Danny joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.

Marco’s fortnight at Findacure

Marco’s fortnight at Findacure

In this week’s blog, we would like to introduce you to our new volunteer, Marco Gallotta. Marco joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.