Rare insights

Rare insights

The diagnostic odyssey: how misdiagnosis and indication broadening can undermine rare disease clinical trials

By CONTRIBUTOR

8 April 2026

Rare insights

When strength looks like rest

By CONTRIBUTOR

8 April 2026

Rare insights

Under the skin: life with epidermolysis bullosa

By CONTRIBUTOR

6 April 2026

Rare insights

The silent crisis in our community – why amyloidosis awareness matters now

By CONTRIBUTOR

6 April 2026

Rare insights

Your health is your wealth

By CONTRIBUTOR

2 April 2026

Rare insights

The weight of stillness – a journey with dystonia: a first journal entry

By CONTRIBUTOR

1 April 2026

Rare insights

A paw-sitive diagnosis: how our rescue dog, Nash, helped my daughter embrace her rare disease

By CONTRIBUTOR

27 March 2026

Rare insights

Making it easier for patients living with rare diseases to find the right specialist

By CONTRIBUTOR

25 March 2026

Rare insights

Why microcephaly must be included in global rare disease agendas: Africa’s perspective

By CONTRIBUTOR

23 March 2026

Rare insights

Life’s a Polyp Foundation celebrates grand launch for Colorectal Cancer Awareness Month

By admin

23 March 2026

Rare insights

From whimsy to wisdom

By CONTRIBUTOR

16 March 2026

Rare insights

Two paths, one childhood: raising twins when one has a rare muscular dystrophy

By CONTRIBUTOR

11 March 2026

Rare insights

Why mental health is a core part of the rare disease experience: listening to the patient voice

By CONTRIBUTOR

11 March 2026

Rare insights

Evelina London Children’s Hospital joins the INPDR Clinician Reported Database

By admin

6 March 2026

Rare insights

The journey, not the destination

By CONTRIBUTOR

4 March 2026

Rare insights

5th International Scientific Congress on Spinal Muscular Atrophy (SMA)

By admin

2 March 2026

Rare insights

Living with anhidrosis taught me resilience, purpose and the power of faith to overcome adversity

By CONTRIBUTOR

2 March 2026

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