Charity & advocacy

Charity & advocacy

Alex TLC Monthly Research Summaries

By CONTRIBUTOR

12 September 2024

Medical

Goal Attainment Scaling: delivering patient-centred clinical trials using personalised outcome measures

By Geoff Case

11 September 2024

Industry Insights

NICE’s key developments in 2024 in summary

By CONTRIBUTOR

11 September 2024

Charity & advocacy

Hope on the horizon: celebrating two years of Hereditary Brain Aneurysm Support and a bright future ahead

By CONTRIBUTOR

10 September 2024

Turning the tide for rare disease

Sickle cell disease: The urgent need for better care, increased research funding and better treatment options

By CONTRIBUTOR

8 September 2024

Patient voice

Find the power in you

By CONTRIBUTOR

4 September 2024

RARE News

UK LSD Collaborative set to release new short—‘Hadid and I’

By admin

2 September 2024

RARE News

Make your voice heard: Participate in the Rare Barometer Survey on the impact of living with a rare diseases on everyday life

By admin

2 September 2024

RARE News

Sickle Cell Disease Association recognises Sickle Cell Awareness Month

By admin

2 September 2024

Charity & advocacy

SMA Europe unites international voices in the new documentary ‘One Community. Shared Dreams’

By CONTRIBUTOR

31 August 2024

Industry Insights

How ‘do’ we versus how ‘should’ we think about disease awareness activities?

By CONTRIBUTOR

30 August 2024

RARE News

Exercise is medicine for people living with PSP & CBD

By admin

28 August 2024

Patient voice

Rare cancers: Sarcoma and your mental health

By CONTRIBUTOR

28 August 2024

Turning the tide for rare disease

Rare Patient Voice: Helping patients and caregivers share their voices

By CONTRIBUTOR

28 August 2024

RARE News

CureDuchenne expands global initiatives andspreads awareness for World Duchenne Day 2024

By admin

23 August 2024

Patient voice

Finding Joy and Keeping Joy: Morven-May MacCallum’s 17-year battle with Lyme disease

By CONTRIBUTOR

21 August 2024

Patient voice

Looking for the positives during hard times: visual snow syndrome

By CONTRIBUTOR

21 August 2024

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