Rare insights

Rare insights

The real-world evidence revolution: how better research can improve patients’ lives

By CONTRIBUTOR

27 October 2022

Rare insights

Leading Muscular Dystrophy charity gives petrol heads a ‘driving experience of a lifetime’ as it continues its commitment to delivering life-changing wish-fulfilment experiences to children and young adults

By admin

26 October 2022

Rare insights

CureDuchenne launches Occupational therapist certification programme to improve care for individuals with Duchenne muscular dystrophy

By admin

20 October 2022

Rare insights

The Student Voice Prize: an international essay competition raising the profile of rare disease

By admin

13 October 2022

Rare insights

What I learned raising a son with haemophilia: Stormy’s story

By CONTRIBUTOR

12 October 2022

Rare insights

World Orphan Drug Congress 2022 – Europe’s most exciting orphan drug event

By admin

10 October 2022

Rare insights

World Duchenne Organization announces Accredited Duchenne Centers Programme

By admin

7 October 2022

Rare insights

Sickle Cell Disease Association holds 50th annual national convention virtually

By admin

5 October 2022

Rare insights

CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)

By CONTRIBUTOR

3 October 2022

Rare insights

Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology

By CONTRIBUTOR

29 September 2022

Rare insights

Governing with Purpose: How to lead a brilliant board – a guide for charity trustees

By CONTRIBUTOR

29 September 2022

Rare insights

American Kidney Fund’s Unknown Causes of Kidney Disease Coalition set to advance policies on rare kidney diseases

By admin

26 September 2022

Rare insights

Merging the metaverse and the rare disease community: join the conversation

By CONTRIBUTOR

22 September 2022

Rare insights

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

By admin

21 September 2022

Rare insights

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By CONTRIBUTOR

14 September 2022

Rare insights

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR

14 September 2022

Rare insights

A ‘bullhorn in stilettos’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR

12 September 2022

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