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Can you help the Genetic Alliance with this study? Read below:


The UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) will be reporting on the progress made in delivering the 51 commitments in the Strategy in time for Rare Disease Day 2018.

As part of the UK Rare Disease Forum’s work in monitoring progress they want to hear from people living and working in the rare disease field. The Forum is gathering case studies that will help to showcase how changes in rare disease healthcare is affecting patients and families.

If you, or a loved one, are affected by a rare condition and have received care and treatment for a rare condition, the UK Rare Disease Forum wants to hear from you. What was outstanding about you the care and treatment that you received? Are there any changes that could have improved your experience? Have there been any changes recently in your care or your experience? What should the next steps be?

The key themes of the UK Strategy for Rare Diseases are: empowering those affected by rare diseases, identifying and preventing rare diseases, diagnosis and early intervention, coordination of care, and research. Do you have experiences to share in these areas?

These questions might help you write your case study:

– What’s changed?

– How the change affect you?

– What should have changed?

– How would that change benefit you?

– Do you feel the impact of the UK Strategy for Rare Diseases? How?

If you work in rare diseases, are there innovative and creative approaches that you have taken to respond to the needs of patients and families? Was this linked to the UK Strategy for Rare Diseases? What, if anything, could have been improved to deliver better care and treatment?

We will collect all submissions and share with the UK Rare Disease Forum, who will make the ultimate selection for the report. Please clearly state whether you would like your name attached to your vignette, or with a description instead (such as ‘patient affected by cancer’). Please do not share information that you would not want to make publicly available. Genetic Alliance UK will retain your submission for use to support the Rare Disease UK campaign and our policy work. Submissions should be no more than 500 words and should be submitted by 15 September.

Please send case studies to: casestudies@raredisease.org.uk.

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