The keen Findacure blog readers among you will have seen a blog late last year introducing Deborah, a member of our brand new Empowerment Advisory Committee. We are proud to have established this Committee late last year in an effort to bring more of the rare disease community voice into Findacure’s projects and decision making. The Empowerment Advisory Committee will specifically advise on – you guessed it – our patient group empowerment projects, to assess existing projects and to explore new services we can develop for our beneficiaries. Membership of the Committee will rotate every year to welcome new ideas on an ongoing basis.
While you can read their official biographies here, as a New Year treat we thought we would introduce you to the personal side of our very first Empowerment Advisory Committee members.
Claire brings the nursing perspective to our Committee, as a Specialist Severe Insulin Resistance & Diabetes Nurse and Senior Research Nurse. While she is new to Findacure, she is by no means new to rare diseases or patient group empowerment. In her roles, she has helped organise patient support group days, written patient information sheets for clinical and research purposes, and particularly enjoys engaging with patients about research. Claire is passionate about helping rare disease patients’ voices be heard to ease the many struggles rare diseases can impart.
David brings medical development expertise to the Committee, from both the pharmaceutical industry and patient group setting. Specific to rare diseases, he has helped the Turner Syndrome Support Society since it was set up 20 years ago, and works in a voluntary capacity for other groups, including Alzheimer’s Society and his local GP Practice Patient Participation Group. Together with his experience in the Life Sciences, he is looking to bring his tacit understandin g of what it takes to make a patient group successful to the Committee. He is a familiar face to Findacure, having attended five workshops over the past three years. You may have also seen a case study from him in our 2015 Impact Report.
Deborah brings many perspectives to the Committee, as someone affected by a rare disease, parent and carer to children living with a rare disease, and a representative of a rare disease patient group. She is another long-time supporter of Findacure, having attended seven of our workshops and having participated in our 2015-2016 peer mentoring pilot. She is passionate about the empowerment and engagement of patients in healthcare. You can read more about her in her introductory blog.
Jonathan brings more carer and industry expertise to the Committee. He has spent 10 years working in the rare disease field, working across more than 25 conditions. Through his own personal experiences, he is keen to support families affected by rare diseases by providing them with the tools they need to learn about and understand their condition, to come to terms with it, and to feel motivated and empowered to act to improve their situation and that of others with similar challenges. It is his belief that by enabling many individuals to take small positive steps, we can make great strides as a whole rare disease community.
Alan brings the Welsh patient perspective to the Committee. He set up his own patient group ‘Ataxia and Me’ in 2015 to support people living with the rare disease ataxia. He has been a long-time supporter of Findacure; he came to our first ever training workshop back in January 2014. Since then, he has been to a whopping 11 out of 12 workshops we have organised and took part in our 2015-2016 peer mentoring pilot. Alan is known as a ‘rare disease warrior’ campaigning for local and regional health boards, as well as Welsh/UK government organisations, for better patient outcomes.
We are incredibly grateful to all of our Advisors who have volunteered to guide us in making 2017 our best year so far in patient group empowerment.