Charity & advocacy

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Charity & advocacy

October is CMT awareness month in the UK

By rpender

22 October 2021

Charity & advocacy

Applications open for Duchenne Patient Academy 2021

By rpender

18 October 2021

Charity & advocacy

Celebrating a year of mental health support for men affected by rare conditions!

By rpender

30 June 2021

Charity & advocacy

Why care for carers?

By rpender

31 May 2021

Charity partner news

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Charity partner news

BBS UK participates in BBS global day to support individuals affected by Bardet Biedl syndrome

By admin

25 September 2021

Charity partner news

Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’

By rpender

14 September 2021

Charity partner news

Michael McGrath – CEO of The Muscle Help Foundation discusses academic research with University of Hertfordshire

By rpender

13 August 2021

Charity partner news

Visual Snow Initiative: the charity on a mission to cure visual snow syndrome

By rpender

12 July 2021

Editors picks

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Editors picks

Reframing the conversation around grief

By admin

6 October 2021

Editors picks

RARE Revolution’s bereavement survey

By admin

6 October 2021

Events

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Events

Reuters Events: Advocacy in Hemophilia

By rstewart

20 October 2021

Events

World Orphan Drug Congress 15-18 November 2021 Melia Sitges Hotel Barcelona, Spain

By rstewart

15 October 2021

Events

NORD Breakthrough Summit 18-19 October 2021

By rstewart

15 October 2021

Medical

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Medical

Zebras do exist: the diagnostic odyssey of rare disease patients

By rpender

13 July 2021

Medical

Phase 3 ‘Proof-HD’ trial begins in Europe for people with Huntington disease

By rpender

28 January 2021

Medical

UK’s largest ever NHS rare disease diagnosis programme launched by Mendelian and Modality NHS Partnership

By rpender

17 December 2020

Medical

Anavex Life Sciences is the company to learn from according to the rare disease advocacy community

By rpender

16 December 2020

Patient voice

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Patient voice

Ataxia and us – Louise and Karls’ Story

By admin

20 September 2021

Patient voice

Mum of four children living with disabling rare neuromuscular disease GNEM raises awareness for foundation aiming to find a cure

By admin

20 September 2021

Patient voice

World Hepatitis Day – Krista’s journey with drug-induced autoimmune hepatitis

By admin

26 July 2021

Patient voice

Martha Harlam is on a mission and has high hopes for the future of ataxia

By rpender

31 March 2021

Press releases

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Press releases

Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting

By rpender

26 October 2021

Press releases

Research Tools Matching Grant Program now accepting applications!

By rpender

25 October 2021

Press releases

Coming Soon: Digital Spotlight with Prevail Therapeutics on Frontotemporal Dementia

By rpender

22 October 2021

Press releases

NICE recommends BioCryst’s ORLADEYO®, an oral, once-daily therapy, to prevent recurrent attacks of hereditary angioedema in patients 12 years and older

By admin

28 September 2021

RARE employment

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RARE employment

Realising our workplace vision

By admin

6 October 2021

RARE employment

RARE Employment Q&A with Police Inspector David Singleton

By admin

6 October 2021

RARE employment

Professional careers and rare disease – finding a balance that works

By admin

6 October 2021

RARE employment

Working from home top tips

By rpender

23 March 2020

RARE parenting

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RARE parenting

Parenting superpower series – stay listening

By admin

7 October 2021

RARE parenting

Every day is a gift: interview with Dr Al Freedman RARE dad and counselling psychologist

By admin

7 October 2021

RARE parenting

Bernd’s brave new world

By admin

7 October 2021

RARE parenting

Fatherhood and fighting for change in the world of rare disease

By admin

7 October 2021

Science & tech

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Science & tech

The transition to precision medicine “one size fits all” to “my medicine”

By rpender

13 January 2021

Science & tech

Introducing our newest RARE Revolution columnist for our new #RARETech column

By rpender

11 January 2021

Science & tech

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

By rpender

24 November 2020

Sunday sessions

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Sunday sessions

Buddhism, yoga and meditation: how Dee Cowburn is following the path to mindfulness to guide her through life’s darker times

By admin

8 October 2021

Sunday sessions

Relationships can be tricky in a world of rare disease

By admin

8 October 2021

Sunday sessions

Sholto’s war

By admin

8 October 2021

Sunday sessions

Kara LaFrance explores the gift of faith, God and connection in a time of great separation

By rpender

18 December 2020

Weblinks and references

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Weblinks and references

Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES

By rpender

13 October 2021

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By rpender

11 January 2021

Weblinks and references

Signposting weblinks for: Mental Health special issue 012(S)

By admin

10 April 2019

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By admin

10 January 2019