About US

What is (RDEB)

Nine year old Phoebe Crowson has Recessive Dystrophic Epidermolysis Bullosa (RDEB). This is a rare genetic inherited lifelong skin condition in which the skin is  fragile and will blister and shear at the slightest touch which causes the equivalent to a third degree burn.

Blisters are not self-limiting and enlarge unless lanced and drained. It affects other mucosal membranes such as eyes, mouth and oesophagus causing painful blistering and scarring as healing occurs. raw areas are dressed with specialist dressings and can be very painful requiring oral pain relief. To date Phoebe has undergone six throat stretches and has never had a playtime at school.

The Phoebe Research Fund is a registered charity (1163875)  and hopes to help sufferers by supporting our beneficiaries CURE EB (1158672) who facilitate essential research into this rare condition.

RESEARCH

The Phoebe Research Fund (1163875) supports beneficiaries CURE EB (1158672). Please click the below link for the most up to date research.

CURE EB

The team

Zoe Crowson

Mother to Phoebe I founded The Phoebe Research Fund in 2015. I felt it was extremely important to ra

Mother to Phoebe I founded The Phoebe Research Fund in 2015. I felt it was extremely important to raise awareness of Epidermolysis Bullosa as it’s such a little known condition which affects less than 5000 people within the UK.

Helen Philips

Helen and husband Ross have been an integral part of Phoebe Research since it began in 2015.

Helen has been an integral part of Phoebe Research since it began. Offering expertise in structuring and design, Helen offers a firm foundation to carry this small charity forward.

Ross Phillips

Husband to Helen this pair

Husband to Helen, Ross brings a design flair which makes eveything we do look extra professional. A perfectionist by nature Ross is meticulous when it comes to tailoring our overall branding.