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
rareqol directors
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
My research address th
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
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.
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.
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 P.A.C. team
JACKY WEBBE
JACKY WEBBE
JACKY WEBBE
About Jacky
I am the founder of Music-Connections Inclusive Dementia Friendly Musical Activities.
I was born and raised in the wonderful city of Cardiff. I began my career as a professional singer, travelling and performing around the world.
As I live with a rare genetic condition a Sarcoidosis, I understand the challenge of balancing the effects of managing a a condition and working full time.
I decided to develop Music-Connections after becoming a family carer and becoming and an activities co-ordinator developing and delivering entertaining workshops and activities to people with dementia their families and carers.
Elizabeth Davenport
JACKY WEBBE
JACKY WEBBE
About Elizabeth
I have over 25 years working 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. 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.
DR shanali perera
JACKY WEBBE
STEFF GREEN
About Shanali
I am the founder of Changing Lanes which is about my reflections and visual expressions from moments of meaning along my journey with a rare long term illness.
I took up Digital art following early retirement due to a rare condition called Vasculitis that came on during my specialist training in Rheumatology. Vasculitis causes inflammation in the blood vessels in different parts of the body.
In my case, it affects my hand function and mobility amongst other things and I have been using an app on my phone to create art to cope with the illness experience, pain and all the changes that came along with it.
STEFF GREEN
STEFF GREEN
STEFF GREEN
About Steff
ENRICH Cymru Co-ordinator
Centre for Aging and Dementia Research.
After graduating from the University of Bath in 2011 with a BSc (hons) in Psychology, I moved to Bangor, North Wales and completed a MSc in the Foundations of Clinical Psychology.
I have worked as a Research Assistant for Bangor University for five years including with the Dementia Services Development Centre on a number of ageing and dementia studies including the Cognitive Function Ageing Studies.
I now co-ordinate the ENRICH project which is a collaboration between the Centre for Ageing and Dementia Research, and Health and Care Research Wales, funded by the Welsh Government. The network supports care homes in Wales to co-produce and deliver research which is of most relevance to the care home community.
BETHAN MASCARENHAS
STEFF GREEN
BETHAN MASCARENHAS
About Bethan
Co-founder of Nurture & Bloom activities for older people
I am the owner and responsible individual of The Old Vicarage Care Home in Llangollen. I also have a background in the arts and in social care, working as Training Consultant in Dementia Care.
I combined both skills sets with my passion for enhancing Quality of Life for older people, by developing our social business Nurture and Bloom.
Our focus is to provide a range of programmes and activities which enables the older age groups to creatively integrate safely into the wider community.
ANNA MOTTERSHEAD
STEFF GREEN
BETHAN MASCARENHAS
About Anna
Co-founder of Nurture & Bloom activities for older people.
I live in beautiful North Wales and love the countryside. My background is in health care as a registered nurse. After a career break, I continued to develop my career in health and social care alongside my love of the outdoors by working with older adults.
I have developed a specialist interest in Social and Therapeutic Horticulture, involving older people in gardening and creative projects.
Our company Nurture and Bloom aims to combine arts and green space activities with health and social care interventions to great a good Quality of Life for older people.
OUR AMBASSADORS
Glenn Webbe - Welsh Rugby Union Veteran
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 AMBASSADORS
humie webbe
RareQoL Special Advisor
Background
Equality and diversity campaigner Humie Webbe has spent her life dedicated to helping people from Black, Asian and Minority Ethnic (BAME) communities achieve a voice – and her tireless efforts have been recognised with two prestigious awards.
At the Ethnic Minority Welsh Women Achievement Association (EMWWAA) Awards Humie was honoured for her outstanding work and commitment to promoting and inspiring people in BAME communities in Wales.
As the strategic equality and diversity lead at the National Training Federation for Wales (NTfW), Humie encourages and engages with people BAME communities and those with disabilities across Wales to promote the opportunities afforded by apprenticeships.
Previously national diversity coordinator for Mind Cymru’s Time to Change Wales campaign, Cardiff based Humie has spent nearly 30 years working the public and community sector championing disadvantaged groups.
A founding member of Black History Month Wales alongside late celebrated Cardiff headteacher, Betty Campbell; Humie has been named among the most influential African Caribbean and African Welsh people, and in 2000 was included in the Western Mail’s power list of 1,000 most influential people in Wales.