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
RARE and Under-Funded
Subscribe Now
Home
Meet the team
Magazine
RARE INSIGHTS
A day in the life
Charity & advocacy
Industry insights
Letters
Medical
News
Patient voice
RARE employment
RARE parenting
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
RARE and Under-Funded
Subscribe Now
To use more accessibility options, please use a different browser such as Chrome or Firefox.
Author:
Joe Rumney
Patient voice
How CLN2 Batten disease changed our life: “A Mother’s Love”
By Joe Rumney
16 May 2024
RARE News
Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)
By Joe Rumney
14 May 2024
RARE News
Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support
By Joe Rumney
9 May 2024
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