Wales, United Kingdom
Our story
We are a diverse team based in North Wales. We came together because of a common desire to improve the Quality of Life for the communities we serve.
We were founded on 4th July 2020: we have adopted an ethical business model based on the principles of Community Psychology.
RareQoL Team
Team
Sondra Butterworth
Sondra Butterworth
Sondra Butterworth
FOUNDER AND DIRECTOR
Research and Social Impact
Background
I live in beautiful North Wales. I trained as a general nurse in Cardiff and I am proud to be raising awareness about rare diseases in Wales. My sister and brother both have been diagnosed with sarcoidosis and I am a Diabetic with a Beta thalassemia.
Research
I have a p
FOUNDER AND DIRECTOR
Research and Social Impact
Background
I live in beautiful North Wales. I trained as a general nurse in Cardiff and I am proud to be raising awareness about rare diseases in Wales. My sister and brother both have been diagnosed with sarcoidosis and I am a Diabetic with a Beta thalassemia.
Research
I have a professional background in education, mental health and social care, and I am completing a
PhD through the University of Chester's
Faculty of Health and Social Care.
My research address the importance of a holistic biopsychosocial approaches to support and care. My PhD research has been based on quality of life and social support in adults with rare genetic skin conditions.
Contact sondra
sondra.butterworth@rareqol.co.uk
Tom Butterworth
Sondra Butterworth
Sondra Butterworth
DIRECTOR
Green Spaces Activities
Background
I have a counselling background having qualified in Person Centred Counselling and worked for many years in both paid and voluntary roles.
Mindfulness
Since taking early retirement and moving to North Wales, I have had both the time and environment to enjoy many hours of mindfulness in the tranqu
DIRECTOR
Green Spaces Activities
Background
I have a counselling background having qualified in Person Centred Counselling and worked for many years in both paid and voluntary roles.
Mindfulness
Since taking early retirement and moving to North Wales, I have had both the time and environment to enjoy many hours of mindfulness in the tranquil countryside.
My earlier work as a person centred counsellor included running mindfulness workshops at retreats.
Green Spaces
Too often mental health issues are related to physical illness and disease, I want to help others to benefit from similar the mindful experiences which have helped me.
Contact Tom
Joy Pingram
Joy Pingram
Joy Pingram
DIRECTOR
Community Engagement
Background
I live in beautiful North Wales and I have now taken very early retirement I live happily with my family alpacas and chickens.
I have a background in the catering industry for over 25 years, still love baking cakes and immersing myself in rural life.
I have first hand experience of living with r
DIRECTOR
Community Engagement
Background
I live in beautiful North Wales and I have now taken very early retirement I live happily with my family alpacas and chickens.
I have a background in the catering industry for over 25 years, still love baking cakes and immersing myself in rural life.
I have first hand experience of living with rare diseases. My diagnosis of Lupus plus six other rare diseases has completely changed my life. It has impacted on every aspect of my daily living.
AJ Pingram
Joy Pingram
Joy Pingram
DIRECTOR
Physical and Mental Well-being
Background
I joined the Army at the age of 16 and at 18 transferred to the Royal Navy as a
Nuclear Propulsion Engineer.
Unfortunately due to injury, my military career was cut short at the age of 25.
From this point I have had 12 operations and more to follow in the near future.
After having to leav
DIRECTOR
Physical and Mental Well-being
Background
I joined the Army at the age of 16 and at 18 transferred to the Royal Navy as a
Nuclear Propulsion Engineer.
Unfortunately due to injury, my military career was cut short at the age of 25.
From this point I have had 12 operations and more to follow in the near future.
After having to leave the military I struggle with his mental health and have received help from military charities and the NHS.
Help for Heroes and Invictus Games
I was proud to represent Great Britain and Wales in several different Disability Sports, winning Gold Medals at the Invictus and Warrior Games.
I competed in the
San Antonio Warrior Games 2014
London Invictus Games 2014
Las Vegas Warrior Games 2015 New York Warrior Games 2016.
I am now an Ambassador for Help for Heroes and MQ: the Mental Health Research Charity.
OUR AMBASSADOR
Glenn Webbe r- Welsh Rugby Union Veterans
RareQoL AMBASADOR
Background
Glenn ( (Sondra's brother) is was first black rugby player to play for Wales – Glenn's book, written with Geraint Thomas - The Gloves Are Off - is currently shortlisted for Rugby Book of the Year in The Telegraph’s Sports Book Awards 2020.
In his book Glenn talks about his diagnosis of Hodgkin's Lymphoma, a rare form of cancer. He recalls how he felt like a real victims of the disease and remembers thinking "this is not how I wanted to finish my day; just fading away".
Rare Advocate
Glenn says " I am proud of his little sister Sondra and so pleased to be the RareQoL Ambassador. I live with a diagnosis of sarcoidosis so I understand only too well the importance of having a good Quality of Life particularly for the Rare Disease Community.
our consultants and advisors
Elizabeth Davenport
RareQoL LEAD CONSULTANT
Background
For over 25 years I have worked with under represented communities and groups. I am a registered Social Worker, Bereavement Counsellor and group facilitator. I work with individuals and groups, both remotely and in a 1:1 setting. For over the past 9 years I have had the privilege to advocate for the Rare Disease Community.
RareQoL Community Network
I am the Lead Consultant at RareQoL heading up our RareQoL Community Network.
I feel that my role within Community Network at RareQoL with enable me to do this and help each community grow and build important and long lasting networks.
I have joined RareQoL as my passion is to work with Expert Rare Advocates to build knowledge and resilience and to raise awareness for the Rare Disease Community and under-represented groups.