Patient voice

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

Science & tech

PTC Therapeutics highlights data on high disease burden and value of treatment across two rare diseases

By CONTRIBUTOR

24 November 2020

RARE News

FSD call for innovative research projects in advanced therapies for Dravet syndrome

By admin

19 November 2020

RARE News

Illuminating the path to youth employment

By admin

18 November 2020

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