Charity & advocacy

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Charity & advocacy

The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments

By rpender

10 March 2022

Charity & advocacy

Living with muscular dystrophy in Nepal

By rpender

13 December 2021

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 partner news

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Charity partner news

Medics4RareDiseases joins forces with Bionical Emas to launch new online training

By rpender

5 April 2022

Charity partner news

Myhre Syndrome Foundation awards $150,000 in grants

By rpender

3 March 2022

Charity partner news

The urgent case for patient assistance funding

By rpender

3 February 2022

Charity partner news

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

By rpender

9 November 2021

Editor's picks

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Editor's picks

Building a bridge between patient and pharma: the CMT story

By rpender

9 May 2022

Editor's picks

What can we learn from European rare disease policies to future-proof our health systems?

By rpender

4 April 2022

Editor's picks

Everyone, on the bus!

By rpender

28 January 2022

Editor's picks

Reframing the conversation around grief

By admin

6 October 2021

Events

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Events

Advocacy in Hemophilia Series: Event 1: Equity of Access in Hemophilia

By rpender

12 May 2022

Events

Conference to pave the way for the next decade of rare diseases

By rpender

11 May 2022

Events

Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29

By rpender

1 April 2022

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

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By rpender

9 May 2022

Patient voice

The rare and wonderful opportunity of parenting a child with a RARE condition

By rpender

29 April 2022

Patient voice

Redefine: Max Feinstein’s concept album inspired by his life with haemophilia

By rpender

4 April 2022

Patient voice

MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy

By rpender

30 March 2022

Press releases

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Press releases

GARDIAN Registry for types 2 & 3 Gaucher disease is now open for registrations

By rpender

17 May 2022

Press releases

National health charity CMTUK is to host annual conference on May 6th-7th

By rpender

29 April 2022

Press releases

Undiagnosed Day 2022 

By rpender

28 April 2022

Press releases

Inozyme Pharma Provides Update for Phase 1/2 Clinical Trials in ABCC6 Deficiency and ENPP1 Deficiency

By rpender

27 April 2022

RARE employment

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RARE employment

My year at RARE Youth Revolution

By rpender

26 January 2022

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 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

Turning the tide for rare disease

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Turning the tide for rare disease

The first step in advocacy is believing in the power of your own voice

By rpender

16 May 2022

Turning the tide for rare disease

Beat SCAD’s passionate and persistent quest for answers for the spontaneous coronary artery dissection community

By rpender

9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By rpender

2 May 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By rpender

25 April 2022

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