Subscribe Now

By entering these details you are signing up to receive our newsletter.

  • To use more accessibility options, please use a different browser such as Chrome or Firefox.

INsights

INsights

Were you clear on the motivation for collecting the data on your quality of life form?

By Emma Bishop, RARE Revolution
8 December 2025

INsights

Do you feel the quality-of-life assessment form adequately allowed you to convey the full impact of your condition, or that of your loved one, and what a good quality of life means to you, or your loved one?

By Emma Bishop, RARE Revolution
1 December 2025

INsights

Have you ever completed a quality-of-life assessment form?

By Emma Bishop, RARE Revolution
24 November 2025

INsights

What does a good quality of life look like to you?

By Emma Bishop, RARE Revolution
17 November 2025

INsights

How does your condition impact your daily life the most?

By Emma Bishop, RARE Revolution
10 November 2025

INsights

Do you feel that industry understands the importance of ‘quality of life’ for the rare disease population?

By Joe Rumney, RARE Revolution
3 November 2025

INsights

If you/your advocacy organisation have participated in any co-design activities with industry, how would you rate your experience of taking part?

By Joe Rumney, RARE Revolution
27 October 2025

INsights

If you/your advocacy organisation have participated in any co-design activities with industry, did you feel the outcomes reflected your community’s input to your satisfaction?

By Joe Rumney, RARE Revolution
20 October 2025

INsights

RARE Revolution poll finds diagnostic pathways and service provision is failing patients

By Julie Penfold, RARE Revolution
20 October 2025

INsights

RARE Revolution poll reveals patient needs are worryingly overlooked in clinical trials

By Julie Penfold, RARE Revolution
13 October 2025

INsights

If you/your advocacy organisation have participated in any co-design activities with industry were the activity/project outcomes fed back to you?

By Joe Rumney, RARE Revolution
6 October 2025

INsights

Have you or your advocacy organisation taken part in any co-design activities or projects with industry?

By Joe Rumney, RARE Revolution
29 September 2025

INsights

Do you understand what is meant by co-design in the context of advocacy and industry partnerships?

By Joe Rumney, RARE Revolution
22 September 2025

INsights

Is your organisation paid fair market value when engaging with pharma/industry activities such as patient engagement and recruitment collaborations, or insights work?

By Joe Rumney, RARE Revolution
15 September 2025

INsights

Do you feel that there is a perception within your community that partnering with pharma/industry impacts your organisation’s independence and autonomy?

By Joe Rumney, RARE Revolution
8 September 2025

INsights

When considering grant funding for your charitable organisation, what type of funding is the most beneficial to your organisation?

By Joe Rumney, RARE Revolution
1 September 2025

INsights

When entering into a master service agreement (MSA) with a pharma/industry partner how did your charitable organisation find the process?

By Joe Rumney, RARE Revolution
25 August 2025
1 2
Skip to content