Charity & advocacy

VIEW MORE >

Charity & advocacy

ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals

By rpender

12 July 2022

Charity & advocacy

Married on a mountain with a collapsed lung

By rpender

23 June 2022

Charity & advocacy

Maryland governor proclaims June 11 is KBG syndrome awareness day

By rpender

6 June 2022

Charity & advocacy

Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play

By rpender

3 June 2022

Charity partner news

VIEW MORE >

Charity partner news

Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission

By rpender

1 July 2022

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

Editor's picks

VIEW MORE >

Editor's picks

World Orphan Drug Alliance (WODA): bringing therapies to underserved patients around the globe

By rpender

6 July 2022

Charity & advocacy

Married on a mountain with a collapsed lung

By rpender

23 June 2022

Editor's picks

Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior

By rpender

20 May 2022

Editor's picks

Building a bridge between patient and pharma: the CMT story

By rpender

9 May 2022

Events

VIEW MORE >

Events

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

By rpender

21 September 2022

Events

Operationalise: Early Access Programmes Summit Europe 18-20th October 2022

By rpender

24 August 2022

Events

RARE Rev-inar Episode 001 Early Access Programmes

By rpender

24 August 2022

Events

The World Orphan Drug Congress USA Boston July 11-13

By rpender

23 May 2022

Medical

VIEW MORE >

Medical

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By rpender

14 September 2022

Medical

Intrahepatic cholestasis of pregnancy: a rare liver disorder that causes risk to unborn babies—the unique insights of Dr Laura Bonebrake, physician and ICP mother

By rpender

29 June 2022

Medical

Inozyme Pharma: developing therapies for abnormal mineralisation disorders

By rpender

9 June 2022

Medical

Seeing Red

By rpender

26 November 2021

Patient voice

VIEW MORE >

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By rpender

5 September 2022

Patient voice

Saying goodbye to the Children’s Hospital

By rpender

15 August 2022

Patient voice

Making peace with numbers

By rpender

6 June 2022

Patient voice

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

By rpender

9 May 2022

Press releases

VIEW MORE >

Events

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

By rpender

21 September 2022

Press releases

The 2022 Jeans For Genes grant programme is now open and inviting applications

By rpender

1 September 2022

Press releases

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

By rpender

31 August 2022

Press releases

Rare Disease Nurse Network (RDNN) announces registration as a charity with the UK Charity Commission (Registered Charity Number 1199654).

By rpender

22 August 2022

RARE employment

VIEW MORE >

RARE employment

Join our team

By rpender

29 August 2022

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 parenting

VIEW MORE >

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

VIEW MORE >

Science & tech

Merging the metaverse and the rare disease community: join the conversation

By rpender

22 September 2022

Science & tech

Sure, you’ve heard about GNEM. But do you know about the Bulgarian variant?

By rpender

19 May 2022

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

Sunday sessions

VIEW MORE >

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

VIEW MORE >

Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

By rpender

14 September 2022

Turning the tide for rare disease

A ‘bullhorn in stilettoes’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By rpender

12 September 2022

Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

By rpender

31 August 2022

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

By rpender

29 August 2022

Weblinks and references

VIEW MORE >

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