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
Women in RARE
Subscribe Now
Home
Meet the team
Magazine
RARE INSIGHTS
A day in the life
Charity & advocacy
Industry insights
Letters to the editor
Medical
News
Patient voice
RARE employment
RARE parenting
RARE ramblings
RARE REV-inar
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
Latest Edition
Women in RARE
Subscribe Now
To use more accessibility options, please use a different browser such as Chrome or Firefox.
Turning the tide for rare disease
Turning the tide for rare disease
Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease
By admin
15 April 2024
Turning the tide for rare disease
Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease
By admin
21 February 2024
Turning the tide for rare disease
Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability
By admin
7 February 2024
Turning the tide for rare disease
Alpha-1: best practices for testing for this and other late-onset genetic diseases
By admin
30 August 2023
Turning the tide for rare disease
Life in the slow lane: finding strength after ataxia diagnosis
By admin
23 August 2023
Turning the tide for rare disease
Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration
By admin
10 May 2023
Turning the tide for rare disease
Arianna’s Magic Boots: stamping out a taboo in children’s books
By admin
26 April 2023
Turning the tide for rare disease
FOP Friends: celebrating a decade of support for the fibrodysplasia ossificans progressiva community
By admin
19 April 2023
Turning the tide for rare disease
Lea Jabre: helping to lift the voice of the stiff person community
By admin
22 March 2023
Turning the tide for rare disease
Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community
By admin
15 February 2023
Turning the tide for rare disease
A new year brings new opportunities: Global Genes – supporting patients, caregivers, advocates and organisations
By admin
1 February 2023
Turning the tide for rare disease
Medics 4 Rare Diseases: reframing rare disease – one Instagram story at a time
By admin
25 January 2023
Turning the tide for rare disease
Barriers to care in sickle cell disease: the reflections of La’Shardae Scott, social worker and RARE mother
By admin
18 January 2023
Turning the tide for rare disease
Rare × 2 = ? What having twins with a rare condition teaches you about people
By admin
4 January 2023
Turning the tide for rare disease
The Christmas ring
By admin
19 December 2022
Turning the tide for rare disease
Rare Diseases Lesotho Association: revolutionising rare disease care and raising awareness in Lesotho
By admin
15 December 2022
Turning the tide for rare disease
Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease
By admin
12 December 2022
1
2
3
4
Next »
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