RCNet: The voice for the psychosocial needs and wellbeing of our Rare Disease Community.
“We will ensure the patient voice remains central to the implementation of the framework, building on the close collaboration we already see across the national and international rare disease community”.
The UK Framework for Rare Diseases 2021
Although the inherent position within The UK Framework for Rare Diseases is focused on physical or medical treatments, there is an acknowledgement of the psychosocial needs of the rare disease community, particularly in the context of the COVID-19 pandemic.
The UK Framework for Rare Diseases stresses that the patient, their families, carers, and the organisations that represent them live with the realities of a rare disease every day.
It goes on to say that the Rare Disease Community have a great amount of knowledge and lived experiences to share. It also states that there will be an assurance that there is representation from those whose voices can often go unheard, including patients from Black and Minority Ethnic (BAME) or disadvantaged backgrounds.
As a collective group, the RareQoL team have a great deal of knowledge and skill to share. But we also recognise that there is much to learn from our communities as well as from health, social care and academic institutions.
We want our RareQoL Community Network to be a group which is empowering and thrives in a supportive and impactful way.
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.
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. We are planning a number of different projects which members of the network may want to be involved in.
One of the key aims of RareQoL is to support
under-represented communities and groups.
Often, under-represented groups feel that their voices are not heard or their expressed need understood.
Recognising that we are all experts in our own experience is an important factor in the educating of others when when developing support programmes.
Communities with a lack of funding may have SOCIAL CAPITAL. This mean using our network, resources, skills and knowledge to work collectively
for greater impact.
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