INsights

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

INsights

Have you experienced push back from professionals regarding either confirming or accepting your diagnosis?

By Joe Rumney, RARE Revolution

18 August 2025

INsights

Did receiving your diagnosis allow you to connect with a relevant community for support?

By Joe Rumney, RARE Revolution

11 August 2025

INsights

Did receiving your diagnosis open access to support services (eg, social services, financial benefits, access to community or national services)?

By Joe Rumney, RARE Revolution

4 August 2025

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