Join our Rare Community Network
Partners Associates & Consultants Network
Our P.A.C. network is for individuals or organisations who want to collaborate with us.
Benefits
- Develop a wider and more diverse network.
- Access to courses and resources on our new RareQoL Learning site.
- Connect with fellow members through our new online forum page.
- We can share your work with our wider network.
Glenn Webbe - RareQoL Ambassador
Welsh Rugby Union Veteran
Glenn was first black rugby player to play for Wales. His book, written with Geraint Thomas - The Gloves Are Off - was 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 'victim' 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 my little sister Sondra and so pleased to be a 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.
Dr Shanali Perera - RareQoL Partner
I am the founder of Changing Lanes, which is an artistic project centred around my reflections and feelings from my time living 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. I have been using an app on my phone to create art to cope with the illness and the pain that comes with it.
Research Blogs
I have a series of research blogs featured on this web site. I am working with Sondra to write research blogs and papers for publication. Please keep checking this website for details.
Podcasts
I have developed a series of podcasts about my personal journey, from medical doctor to patient. I hope you will find informative. The podcast 'Inside Outside' is featured on this website, please check it out.
Zainib Hussain - RareQoL Volunteer
For over 25 years, I have worked with adults and children with complex health conditions and disabilities including a rare disease; both as a volunteer and as a community support manager. I have provided support by delivering information, offering guidance, and advocated for those from my community to help their voices to be heard.
I have worked in the role of an advocate for families during social care and DWP assessments, meetings, and tribunals.
I speak 5 languages so my knowledge and expertise have enabled me to work in multidisciplinary teams both in clinical settings and the community. I provide independent translation services and have developed resources for South Asian Communities making information available and accessible in their mother tongue.
My role as a RareQoL volunteer is to support the EDIRA project and I am part of the RCNet .
Jacky Webbe - RareQoL Partner
Music Connections
Jacky Webbe is the founder of Music Connections, who is a professional singer and Musical Co-ordinator of a community gospel choir.
RareQoL are proud to be collaborating in partnership with Jacky as she is a skilled facilitator and talented entertainer. Specialising in dementia friendly activities, Jacky bring communities together through interactive entertainment to promote wellbeing to improve quality of life.
Get in touch for more informatio
Wellbeing Activites with Jacky Webbe
'The Good Old Days'
Motown Afternoon Singalong
'The Good Old Days'
A fun, lively and interactive singalong show featuring songs from the Music Hall era with "Pearly Jacq" singing songs fo yesterday in a trip down Memory Lane. Virtual session available
Music and Memories
Motown Afternoon Singalong
'The Good Old Days'
A structured interactive reminisce session that incorporates a range of activities using the 5 senses through music and song. A fun and enjoyable group activity.
Motown Afternoon Singalong
Motown Afternoon Singalong
Motown Afternoon Singalong
Jacky Webbe
An afternoon of songs from the most ever popular sounds of Motown. Sessions are lively and interactive and include song lyrics and pictures of Motown artists.
Virtual session available.