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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
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