Patient voice

Patient voice

Redefine: Max Feinstein’s concept album inspired by his life with haemophilia

By CONTRIBUTOR

4 April 2022

Rare insights

National charity MPS Society encourages the public to spread awareness about rare genetic disease

By admin

4 April 2022

Medical

What can we learn from European rare disease policies to future-proof our health systems?

By CONTRIBUTOR

4 April 2022

RARE News

Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29

By admin

1 April 2022

Patient voice

MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy

By CONTRIBUTOR

30 March 2022

RARE News

Mental health and care navigation top list of needs for people living with neurodegenerative diseases at Adira Foundation congress

By admin

28 March 2022

Turning the tide for rare disease

Time for action

By CONTRIBUTOR

28 March 2022

Turning the tide for rare disease

The Global Genes Rare Disease Equity, Diversity and Inclusion Report: the glimmers of hope

By CONTRIBUTOR

23 March 2022

Turning the tide for rare disease

Libmeldy gene therapy offers a lifeline to children with leukodystrophy and gives hope to the rare disease community

By CONTRIBUTOR

23 March 2022

RARE News

Mississippi becomes first state in 2022 to sign newborn screening legislation

By admin

17 March 2022

Turning the tide for rare disease

Turning the tide for adult polyglucosan body disease (APBD)

By CONTRIBUTOR

16 March 2022

Turning the tide for rare disease

The Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges

By CONTRIBUTOR

16 March 2022

Turning the tide for rare disease

The healing power of storytelling

By CONTRIBUTOR

14 March 2022

Turning the tide for rare disease

Gillian Jackson: bringing positive energy and information to the online BBS community

By CONTRIBUTOR

11 March 2022

RARE News

New research released with recommendations for improving psychological support at the point of a rare disease diagnosis

By admin

10 March 2022

Charity & advocacy

The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments

By CONTRIBUTOR

10 March 2022

Turning the tide for rare disease

How 10,000 people living with disability could end the foster care crisis

By CONTRIBUTOR

7 March 2022

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