Hi I'm Elizabeth Davenport...
I am a former Social Worker with over 20 years’ experience of working in the charity sector.
I have worked with a range of diverse families including families with babies, older children, young people and adults with complex disabilities and sensory impairments.
My passion has always been to empower people to have the best quality of life, enabling them to access and enjoy their local communities and services. I am a qualified bereavement counsellor and experienced in providing 1:1 support for bereaved individuals. I also have developed resources and facilitated support groups for bereaved families who have lost a loved ones.
Working with RareQoL
It is an honour to work alongside Sondra Butterworth as we both share a passion for working with rare disease communities and underrepresented groups.
Helping to support and develop the Rare Community Network (RCNet) and the
'Whose voice is it anyway' campaign will enable the RCNet members to
gain a powerful voice to be heard and acknowledged.
Our work with underrepresented and isolated groups, especially rare disease groups during the Covid-19 pandemic has increased.
We hope to hold events in person soon but for now is now we will have virtual, meetings and provide email and telephone support.
So please be assured that support is still available.
Rare Advocate Consultancy E: elizabeth.RAconsultancy@aol.com
M: 07305 942895
Member British Association Social Work (BASW)
RareQoL is led by a small group of adviocates with the aim of improving Quality of Life for our communities.
Our Rare Community Network is made up of representatives from small charities and organisations advocating for the Rare Disease Community.
Our campaign 'Whose voice is it any' aims to provide a voice for the psych-social needs of those who voices often go unheard.
Niemann-Pick Diseases are a group of rare and devastating inherited lysosomal storage disorders that affect both children and adults. I have had over ten years’ experience of working with Niemann-Pick UK; my role included provided specialist non-clinical support, information, and advocacy. I also worked with specialised clinical teams, delivered workshops, and spoke at conferences to raise the awareness of Niemann-Pick. I have supported other rare disease groups, including families living with the effects of metabolic diseases and Epidermolysis Bullosa (EB) Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders.
My background has also included working with underrepresented communities including different ethnic groups and people with ultra-rare conditions. I have coordinated and facilitated groups to enable people and groups to have the skills to be heard and impact change in their communities.
Starting my own consultancy, to offer bespoke support to small charities and deliver training to professionals was a natural next step for me. I decided to put my experience and understanding of rare disease and isolated groups into practice as many people had told me that I had too much experience not to share with others. My aim is to work with charities and not for profit companies, including ultra-rare and other under-represented groups so people to have a voice and can make informed decisions.
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