Thank you for caring and for any help that you are able to offer. Together we can beat this most cruel of conditions and give these children the chance to live a life free from excruciating pain – a life like ours.
100% of your donation will go to fund research. The Sohana Research Fund is run by Sohana’s parents who cover the costs of events and fundraising, helped by a volunteer team.
For amounts over £5000 please email firstname.lastname@example.org to pay by BACs transfer.
To donate by mail, download a donation form here and send in with your your cheque or CAF payable to the Sohana Research Fund and mail it to:
Sohana Research Fund
10 Huntingdon Street
Please call 02076070611 and say you wish to make a donation to the Sohana Research Fund and to pay by BACS transfer
RDEB is an incurable, progressive, debilitating and very painful; condition which leads to malignant skin cancer and an early death. Researching this condition has been chronically underfunded for years because of the rare nature of the condition.
On every other scale – it is a condition that needs treatment. In humanitarian terms these children suffer diabolical pain every minute of every day. In economic terms, the condition is very expensive to ‘manage’. The treatments would be cost effective and are expected to improve quality of life significantly. An outcome that was unthinkable for RDEB until very recently. To not be able to fund this work would be therefore a travesty. Ultimately a cure is expected to come from one of the research strands being pursued . Delaying this possibility, prolongs the suffering of children alive today.