BOARD OF TRUSTEES
Rachel Rimmer | Founding Director and Chair | Patient - Diagnosis in 2003 with HIDS/ MKD with heterozygote N205D/ T114 frameshift
Welcome to RACC- UK.
My name is Rachel and I am the Founder of the organisation. In 2003, I was diagnosed with Hyper IGD Syndrome (HIDS). This is a rare Autoinflammatory condition that affects approximately 300 people worldwide. I have had symptoms from birth and Dr's spent 16 years considering other possible diagnosis' such as Rheumatoid Arthritis, Chron's Disease etc. before considering genetic testing for HIDS. Due to it's rarity and complexity, it's very difficult to manage. There is little knowledge and understanding of these conditions here in the UK, requiring specialist care from professional like Dr Lachmann at the Royal Free Hospital- NAC in London.
Receiving my diagnosis was a rollercoaster ride really due to it's complexity. As a result I have spent most of my life feeling isolated, not being able to share my frustrations with other patients. After coming across other UK patients, it was evident that there were some specific UK issues regarding genetic testing, reaching a diagnosis and accessing treatments. So I have taken the plunge and created this organisation to try and improve the lives of UK patients with these rare conditions.
As a former Vice President in a Students' Union, I have experience of advocating on a large scale, influencing and implementing policy as well as creating and delivering a Mental Health based campaign. Throughout my former role, I was also a trustee of the organisation. I know that my skills in my previous role will enable us to develop this organisation effectively and accurately.
Janet Bloor | Vice - Chair (Parent Carer of her son with Duchenne Muscular Dystrophy) | Family Law Mediator
By profession, Janet is a Family Mediator, a Legal Consultant at KGIA Solicitors, as well as a Barrister.
Janet's son was diagnosed with Duchenne Muscular Dystrophy when he was about 8 years old and since then Janet has worked in the Rare Disease Community for over 15 years, Chair for Action Duchenne for 4 years before becoming Vice - Chair for RACC-UK.
Anna - Kate Davies | Trustee | Primary School Teacher
By profession, Anna is a Primary School Teacher. She attended Oxford Brookes University where she obtained her combined honours degree in Psychology and Early Years. She is a mother to one, and has provided a lot of support as a caregiver to Rachel when she has been unwell