We are pleased to announce the establishment of our first Empowerment Advisory Committee, made up of rare disease patients, carers, and advocates. In this week’s blog, we would like to introduce one of our committee members and her rare story.

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Hi, I am Deborah. I have two children, Rhonnie and Branwen, with Fetal Valproate Syndrome. This was caused by the medicine Sodium Valproate that I took for my epilepsy when I was pregnant.

Both myself and my daughter Branwen attended PRAC (Pharmacovigilance Risk Assessment Committee) – a part of the patient delegation that gave evidence against the medicine: Sodium Valproate. This has led to this medicine changing its status, as it is now no longer to be given to females of child bearing potential. Through this I have become involved in the MHRA (Medicines and Health Product Agency) as a part of the Valproate toolkit stakeholder forum and the patient group consultative forum. These experiences have led to an interest in Adverse Drug Reactions and the Yellow Card.

I believe strongly in patient empowerment; I think that the Findacure patient portal has a great deal to offer that supports this concept. Tools like this enable patients to take their aspirations regarding the healthcare of those that they support and give them the substance. It is knowledge that provides the understanding to truly empower a person to utilise their life experience with true effectiveness. The empowerment of the patient in the role of healthcare today is an important and innovative move. Today the words of Dr Elizabeth Blackwell (1821 – 1910; the first female doctor) rings true for all those that can influence health care whether this is a healthcare professional or an expert patient.

‘We are not just tinkers who merely patch and mend. We are the watchmen; guardians of the life and the health of our generation, so that stronger and more able generations may come after.’

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