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Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting

England, UK (October 2021) the #WhoseVoice report is published outlining the findings of a rare disease engagement meeting with NHS England and Improvement (NHSE&I) hosted by the Rare Community Network and Medics4RareDiseases. The meeting and the publishing of the findings demonstrates a continuing commitment to raising up underrepresented voices in the rare disease (RD) community from all the parties involved.

The meeting was held in support of the #WhoseVoice campaign started by Dr Sondra Butterworth, founder of the Rare Community Network (RCNet). As a member of RCNet, M4RD recognises the need for more diverse voices informing the decisions about rare disease service design and the future of RD innovation and investment. Somewhat uniquely, this consultation meeting was handed over to the patient advocacy groups to design and facilitate, creating a comfortable and energetic space for stakeholders to be listened to.

“M4RD is proud to support the #WhoseVoice campaign as we all need to strive to include
everyone impacted by rare disease in the advocacy community. Facilitating this meeting,
alongside Rare Community Network was a privilege and we would like to thank the NHSE&I
team for also championing the drive for greater inclusion in consultation ” Dr Lucy
McKay, Chief Medical Officer at Medics4RareDiseases

Sondra Butterworth chaired the main meeting with attendees who are doing vital work in the rare disease advocacy field that you may not have heard from before, or who represent organisations that engage specifically with “yet to reach groups”. Three breakout rooms went on to discuss three of the UK Rare Disease Framework’s Priority areas:

● Helping patients get a final diagnosis faster
● Better coordination of care
● Improving access to specialist care, treatments and drugs

Patient voice and healthcare professional awareness are both integral to all discussions about rare disease services and the attendees were asked to specifically focus some discussion time on how these two important elements aren’t lost in the planning. As a result a core theme from all three groups emerged: the need to strive for equity, rather
than equality, when patient experience demonstrates that systems are designed in a way that are more accessible to some than others.

Striving for health equity doesn’t mean providing the same services for everybody, it’s about
having appropriate services for our diverse community” – Kerry-Leeson Beevers from
Breaking Down Barriers

The aim of the meeting was to drive discussion that can help make meaningful change for everyone in the rare disease community, especially those who have less of a platform to have their concerns and ideas heard. This was one of many consultation exercises that NHSE&I have been carrying out since the publication of the UK Rare Diseases Framework in January 2021, and a chance to discuss the detail of what should come next. We hope the report published today will be useful for not only those who attended but for the other UK nations and the rare community in general

The Whose Voice Is It Anyway meeting report is available here: https://www.m4rd.org/wpcontent/uploads/2021/10/M4RD_WHOS_VOICE_IS_IT_ANYWAY_REPORT_211019_V2_emotive.pdf
It will also be accessible via the M4RD website on Tuesday 26th October. Share with #WhoseVoice

About Rare Community Network

The Rare Community Network was established by Sondra Butterworth (RareQoL)and is made up of Rare Advocates from grass roots charities and third sector organisations. RCNet wants to make sure that the UK Rare Diseases Framework addresses the need for wider support including under-represented groups, those with mental health and
care needs. As partners and key stakeholders, third sector organisations and rare disease charities must have funding to enable them to contribute to the Rare Disease Framework implementation plans. Raising awareness is not just needed within the medical and care service, it is also important on a wider scale for policy makers and commissioners to understand the needs of the rare disease community. https://rareqol.co.uk/rare-community-network

About Medics4RareDiseases

Medics4RareDiseases (M4RD) is a charity registered in England and Wales for the purposes of relieving the suffering of people affected by rare diseases and their communities. It is doing this by driving an attitude change towards rare disease amongst medical professionals and medical students. M4RD provides education in the rare disease field for medical students and doctors in training. Our ultimate aim is to improve the patient experience and speed up the journey to diagnosis. https://www.m4rd.org

Acknowledgements

On behalf of all meeting facilitators, we would like to extend a huge thankyou to all the delegates that participated in the ‘Whose Voice Is It Anyway?’ meeting. Every delegate brought their experience and expertise to the table and helped us engage in such fruitful, constructive, and open exchanges to help provide insight into the Priorities outlines in the Framework. M4RD would also like to extend a big thank you to emotive for helping the team facilitate this meeting and for creating the report! emotive is a global healthcare communications agency who create inspiring medical communications. The team have been supporting M4RD with pro bono work for three years now and they continue to be integral to the charity’s success. M4RD would like to acknowledge and thank the companies who have sponsored the M4RD 2021 workplan: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Freeline, Illumina, PTC Therapeutics, Sarepta Therapeutics and SOBI. All funding received is used for achieving the objects of Medics4RareDiseases. M4RD operates entirely independently from these companies and they have no editorial control over M4RD’s contents or activities

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