Whose voice is it anyway? Rare Community Network including BAME

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. 

Let’s hope so…

Our Rare Community Network: RCNet

In response to The UK Framework for Rare Diseases the RareQoL team recently set up meetings with other groups, small charities and organisations supporting  our Rare Disease Community. The aim of the meetings was base around key objectives.

1. Psychosocial needs and wellbeing

Develop a conversation around the psychosocial needs and wellbeing of our Rare Disease Community. 

2. Framework for Rare Diseases underpinning themes

(a) The Patient Voice 

(b) National and International Collaboration. 

3. Collaboration

Collaborate or share skills and resources which will raise awareness about the psychosocial needs for our community.

4. Psychosocial research

Promote involvement in, good quality community led psychosocial research. 

Promote research outcomes which clearly demonstrates an improvement in the quality of life for our community.

5. Funding applications

Explore the opportunities for joint funding applications.

6. Publications

Possible collaboration in writing high quality papers and articles for open access publication.

Whose VOICE is it anyway?

The majority of the RCNet attendees came from grass roots organisations including individuals who are in direct contact with our Rare Disease Community. 

Some are from rare disease families, others are parents, carers or advocates rare advocates. 

There was general agreement that as we are grass root organisations, bottom up’ approach is instilled in our practice. Therefore, it was felt that we are closer to the voices of our community than  public sector organisations, pharmaceutical industry or academia.


Discussions within the RCNet highlighted a growing frustration with the general lack of funding available for small, rare disease groups or charities. 

Most expressed their disappointment that funding does seem to mainly go to public sector bodies, academia or larger charities.

There was a feeling of frustration within the group, as many had participated in various in public engagement projects and activities which were aimed at our community. Most of us had been contacted  by researchers or policy makers to complete surveys, write reports, attend focus groups, attend meetings, or to give presentations. 

Many of the group receive no or very little funding when participating in these engagement activities. 

What adds to the frustration is that, when applying for funding for our organisations, some felt they had been unsuccessful because their organisations are too small.

We can’t do it alone. Collaboration and sharing knowledge skills and resources has to be the way forward. 

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