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Charity & advocacy
Charity & advocacy
My journey with multiple sclerosis and advocacy
By CONTRIBUTOR
28 May 2021
RARE News
Non-profit partnership with Illumina aims to reduce the diagnostic odyssey for individuals living with a rare epilepsy
By admin
12 April 2021
RARE News
ShieldUs call to action for our learning disabilities community’s right to life
By admin
1 April 2021
Patient voice
Martha Harlam is on a mission and has high hopes for the future of ataxia
By CONTRIBUTOR
31 March 2021
Patient voice
Engagement through social support
By CONTRIBUTOR
29 January 2021
Medical
Phase 3 ‘Proof-HD’ trial begins in Europe for people with Huntington disease
By CONTRIBUTOR
28 January 2021
RARE News
Research grant of over 2 million Euro offers new hope for children with rare condition Schinzel-Giedion syndrome
By admin
26 January 2021
Science & tech
The transition to precision medicine “one size fits all” to “my medicine”
By CONTRIBUTOR
13 January 2021
Weblinks and references
References and signposting weblinks for: RARE Patient Partners edition 014
By admin
11 January 2021
Science & tech
Introducing our newest RARE Revolution columnist for our new #RARETech column
By CONTRIBUTOR
11 January 2021
Sunday sessions
Kara LaFrance explores the gift of faith, God and connection in a time of great separation
By CONTRIBUTOR
18 December 2020
Medical
UK’s largest ever NHS rare disease diagnosis programme launched by Mendelian and Modality NHS Partnership
By CONTRIBUTOR
17 December 2020
Sunday sessions
Carlos Briceño explores the power and peace of the present moment
By CONTRIBUTOR
16 December 2020
Medical
Anavex Life Sciences is the company to learn from according to the rare disease advocacy community
By CONTRIBUTOR
16 December 2020
RARE News
Reforming Rare Diseases: Why Genetic Alliance UK and Alexion are calling for urgent change to improve patient care
By admin
9 December 2020
Sunday sessions
Attitude, adapt, faith and purpose; how Dan “Dry Dock” Shockley uses his positive state of mind to adapt to life as an “ostomate” and raise awareness for hereditary colorectal cancer.
By CONTRIBUTOR
4 December 2020
RARE News
People with rare neurological conditions need a much better deal says new Neurological Alliance report
By admin
25 November 2020
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