Charity & advocacy

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Charity & advocacy

A new UK charity launches to support those impacted by Glut1DS

By rpender

12 November 2021

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 partner news

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Charity partner news

Cambridge charity launches crowdfunding campaign to raise £30,000 for the first global AKU registry.

By rpender

9 November 2021

Charity partner news

What is HH? Carrie Fulcher tells her story of finally discovering that she had a hypothalamic hamartoma

By rpender

30 October 2021

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

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

Breaking Down Barriers – Understanding Health Inequalities Event

By rpender

1 November 2021

Events

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

By rstewart

15 October 2021

Events

Reuters Events: Pandemic Prevention

By rstewart

1 October 2021

Medical

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Medical

Seeing Red

By rpender

26 November 2021

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

Patient voice

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Patient voice

“Do you hear me?”

By rpender

3 December 2021

Patient voice

My scars tell a story

By rpender

24 November 2021

Patient voice

Hannah, Me and NCSE

By rpender

10 November 2021

Patient voice

Cavernous malformation and the Breaking Barriers Initiative

By rpender

5 November 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