Wales, United Kingdom
About RareQoL: Community Network
Sharing knowledge and skills
As a collective group, the RareQoL team have a great deal of knowledge and skill to share. But we don't know everything.
We want our RareQoL Community Network to be a group which is empowering and thrives in a supportive and impactful way.
What is the aim of the RareQoL Community Network?
Our RareQoL Community Network is based on the core values of Community Psychology.
The guiding principle is to maintain respect for equality and diversity,
promote empowerment and participation.
Who can join our RareQoL Community Network?
Our RareQoL Community Network is aimed at small charities or community groups who may not have the resources to achieve as much as they would like.
We aim to develop a range of resources and activities which we hope our community network will find useful.
Collaboration and Partnerships
We are planning a number of different projects which members of the network may want to be involved in .
These projects will be based around our key areas of work
- research
- well-being
- green- spaces events
- networking activities
We hope you will want to get involved.
Social Impact
We want to demonstrate how working in collaboration with others who have a shared vision,
a great deal can be achieved.
What would you like from your network?
If you would like to see us develop any specific projects, please complete this survey. Thank you
Humie Webbe joins RareQoL COVID Collective as a Special Advisor
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.
OUR COVID COLLECTIVE team : community network project
Sondra Butterworth
Sondra Butterworth
Sondra Butterworth
Director of Research and Social Impact
I originally trained as a registered general nurse, then gained a MSc in Psychology.
I developed a special interest in Community Psychology, particularly empowerment and inclusion of under-represented communities.
This developed further when she began studies towards gaining a PhD in Health and So
Director of Research and Social Impact
I originally trained as a registered general nurse, then gained a MSc in Psychology.
I developed a special interest in Community Psychology, particularly empowerment and inclusion of under-represented communities.
This developed further when she began studies towards gaining a PhD in Health and Social Care : my thesis is focused on Quality of Life and Social Support.
As the Founder of RareQoL Ltd I wanted to develop a social enterprise with a mission
to improve Quality of Life for the
Rare Disease Community and
Under-represented groups.
Dr Shanali Perera
Sondra Butterworth
Sondra Butterworth
Founder of Changing Lanes
From clinician to patient
becoming a patient in my own specialty
Changing Lanes 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 s
Founder of Changing Lanes
From clinician to patient
becoming a patient in my own specialty
Changing Lanes 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
Sondra Butterworth
Bethan Mascarenhas
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
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
Bethan Mascarenhas
Bethan Mascarenhas
Co-founder of Nurture & Bloom CIC
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
Co-founder of Nurture & Bloom CIC
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 CIC.
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
Bethan Mascarenhas
Jacky Ayres
Co-founder of Nurture & Bloom CIC
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 S
Co-founder of Nurture & Bloom CIC
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 CIC aims to combine arts and green space activities with health and social care interventions to great a good Quality of Life for older people.
Jacky Ayres
Bethan Mascarenhas
Jacky Ayres
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
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.
Music is an important therapy used by practitioners to connect with people with dementia and their families.
Bringing pleasure, evoking memories and positive emotions. Promoting engagement, social inclusion and ultimately improving Quality of Life.
