Close
×
Subscribe Now
By entering these details you are signing up to receive our newsletter.
First Name
Last Name
Your Email
Type of visitor?
Individuals with a rare condition
Caregiver/family member
Industry/biotech/pharma
Healthcare professionals
Charity/advocate
General interest
Newsletters
RAREBite Newsletter Subscribers (Twice Weekly)
Magazine and RARE Round-Up Weekly Newsletter
Latest Edition
Subscribe Now
Home
Meet the team
Magazine
RARE INSIGHTS
A day in the life
Charity & advocacy
Industry insights
Letters
Medical
News
Patient voice
RARE caregiving
RARE ramblings
RARE REV-inar
Reviews
Science & tech
Sunday sessions
Turning the tide for rare disease
THE PEOPLE OF RARE
Digital Spotlight
RARE Reports
Resources
Charity Partners
WORK WITH US
Rare Revolutionaries
Community Gallery
Rare Youth
SHOP
Latest Edition
Subscribe Now
To use more accessibility options, please use a different browser such as Chrome or Firefox.
Author:
CONTRIBUTOR
Patient voice
A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease
By CONTRIBUTOR
9 May 2022
Science & tech
Building a bridge between patient and pharma: the CMT story
By CONTRIBUTOR
9 May 2022
Turning the tide for rare disease
The Big Sunflower Project
By CONTRIBUTOR
2 May 2022
Patient voice
The rare and wonderful opportunity of parenting a child with a RARE condition
By CONTRIBUTOR
29 April 2022
Turning the tide for rare disease
A multi-centre registry for idiopathic pulmonary capillaritis
By CONTRIBUTOR
25 April 2022
Turning the tide for rare disease
Project Sebastian: a safe space for the rare disease community to talk, listen and connect
By CONTRIBUTOR
20 April 2022
Turning the tide for rare disease
The Akari Foundation – a light of hope for people with DMD in the Hispanic community
By CONTRIBUTOR
11 April 2022
Turning the tide for rare disease
Riding the wave of medical research to find a cure for Ellie
By CONTRIBUTOR
6 April 2022
Patient voice
Redefine: Max Feinstein’s concept album inspired by his life with haemophilia
By CONTRIBUTOR
4 April 2022
Medical
What can we learn from European rare disease policies to future-proof our health systems?
By CONTRIBUTOR
4 April 2022
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
Posts navigation
Older posts
Newer posts
Skip to content
Open toolbar
Accessibility Tools
Accessibility Tools
Increase Text
Increase Text
Decrease Text
Decrease Text
Grayscale
Grayscale
High Contrast
High Contrast
Negative Contrast
Negative Contrast
Light Background
Light Background
Links Underline
Links Underline
Readable Font
Readable Font
Reset
Reset
