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Author:
CONTRIBUTOR
Patient voice
MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy
By CONTRIBUTOR
30 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
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
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
Turning the tide for rare disease
Brace! Brace! Brace… for burnout!
By CONTRIBUTOR
2 March 2022
Turning the tide for rare disease
Turning the tide for rare disease
By CONTRIBUTOR
28 February 2022
Industry Insights
Living with Gaucher disease: challenging encounters along the patient journey
By CONTRIBUTOR
17 February 2022
Patient voice
Cavernomas—a patient’s efforts to understand the possible systemic implications of a defect in the KRIT1 (CCM1) gene
By CONTRIBUTOR
14 February 2022
Patient voice
The global disability community and the DE&I discussion: a match that needs to be made
By CONTRIBUTOR
9 February 2022
Patient voice
Everyone, on the bus!
By CONTRIBUTOR
28 January 2022
A day in the life
My year at RARE Youth Revolution
By CONTRIBUTOR
26 January 2022
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