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RAREBite Newsletter Subscribers (Twice Weekly)
Magazine and RARE Round-Up Weekly Newsletter
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New IN this week
IN the know
INnovation
IN motion
Women IN RARE
INcognito
IN the thick of it
INsights
IN the spotlight
IN the round
IN the loop
IN the pipeline
IN person
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New IN this week
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Youth advocacy and the limits of social media-centred models
By Michael Wilbur, MW Advocacy Solutions
30 March 2026
Parent-led: the FOXG1 Research Foundation’s path from diagnosis to drug development
By Nicola Miller, RARE Revolution
30 March 2026
IN the know
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Youth advocacy and the limits of social media-centred models
By Michael Wilbur, MW Advocacy Solutions
30 March 2026
Silent absence of research in treatment journeys
By Keith Berelowitz, pRxTrialPort
9 March 2026
Rare Disease Day: after the dust settles
By Nicola Miller, RARE Revolution
9 March 2026
Rethinking consent: The unresolved challenge of genomic newborn screening
By Amy Gaviglio, Connetics Consulting
23 February 2026
INnovation
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The age of dAIgnosis: How is AI impacting access to health information?
By Florence Cornish, RARE Revolution
23 March 2026
How real-time, real-world data unlocks precision in rare disease marketing
By CONTRIBUTOR
2 March 2026
AI is creating a new Darwinian jobs market where the super employee is king
By CONTRIBUTOR
9 February 2026
Is it possible to predict and prevent seizures? The promise of a new algorithm
By Florence Cornish, RARE Revolution
2 February 2026
IN motion
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Nicole Zeitzer Johnson on parent-led drug development for FOXG1
By Nicola Miller, RARE Revolution
23 March 2026
Brandon Cieniewicz on treating acute myloid leukaemia through targeting CER-T cells
By Nicola Miller, RARE Revolution
16 March 2026
Dr Martin Turner and Rosie Lindup on BIA’s UK Biotech Financing 2025 report
By Nicola Miller, RARE Revolution
16 February 2026
Tim Szalay – striving to revolutionise biomedical research
By Nicola Miller, RARE Revolution
19 January 2026
Women IN RARE
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Elizabeth (Beth) White, chief operating officer and co-founder, Orphan Therapeutics Accelerator, Inc.
By CONTRIBUTOR
23 March 2026
Nadine Großmann, vice chair FOP Germany, chair of the IFOPA’s board of directors, vice chair LOUDRARE e. V., PhD candidate rare diseases
By CONTRIBUTOR
2 March 2026
Lesa Brackbill, director of advocacy, Patient Advocacy Strategies
By CONTRIBUTOR
16 February 2026
Kris Pierce, strategic lead, Rare Disease NSW and founder, SCN2A Australia
By CONTRIBUTOR
9 February 2026
INcognito
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incognito: the secret life of a…rare disease parent and charity founder
By CONTRIBUTOR
16 February 2026
incognito: the secret life of an…independent patient engagement consultant to industry
By CONTRIBUTOR
2 February 2026
incognito: the secret life of a…rare disease board trustee
By CONTRIBUTOR
25 August 2025
incognito: the secret life of a…community CEO
By CONTRIBUTOR
11 August 2025
IN the thick of it
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Putting you in the heart of the rare community – Cure Mito Foundation
By CONTRIBUTOR
16 March 2026
Putting you in the heart of the rare community – Hope for Hypothalamic Hamartomas UK
By CONTRIBUTOR
2 March 2026
Putting you in the heart of the rare community – Timothy Syndrome Alliance (TSA)
By CONTRIBUTOR
9 February 2026
Putting you in the heart of the rare community – SMS Foundation UK
By CONTRIBUTOR
24 November 2025
INsights
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Do you have a clear understanding of how to compliantly raise awareness for study/trial awareness to the public?
By Emma Bishop, RARE Revolution
16 March 2026
Do you have a clear communication plan for study/trial awareness and recruitment?
By Emma Bishop, RARE Revolution
9 March 2026
Do you understand the difference between study/trial awareness and study/trial recruitment?
By Emma Bishop, RARE Revolution
23 February 2026
Who do you feel is responsible for study/trial awareness and recruitment?
By Emma Bishop, RARE Revolution
16 February 2026
IN person
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Genomics in the UK – streamlining adoption in the NHS
By Julie Penfold, RARE Revolution
16 March 2026
Genomics in the UK: priorities for innovation, integration and data use
By Julie Penfold, RARE Revolution
9 March 2026
Genomics in the UK – MHRA on regulatory considerations for sequencing, analysis and diagnostics
By Julie Penfold, RARE Revolution
9 March 2026
Genomics in the UK – progress made and priorities for the next phase
By Julie Penfold, RARE Revolution
2 March 2026
IN the loop
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Fostering greater collaboration in rare disease research
By Becca Bull, RARE Revolution
16 March 2026
From ‘high conviction’ to patient impact: inside BIA’s UK Biotech Financing 2025 report – Part two
By Nicola Miller, RARE Revolution
2 March 2026
Accessing life-sustaining equipment: a silent systemic gap
By CONTRIBUTOR
23 February 2026
From ‘high conviction’ to patient impact: inside BIA’s UK Biotech Financing 2025 report – Part one
By Nicola Miller, RARE Revolution
23 February 2026
IN the pipeline
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Parent-led: the FOXG1 Research Foundation’s path from diagnosis to drug development
By Nicola Miller, RARE Revolution
30 March 2026
Rethinking cell therapy: CERo Therapeutics brings a new mechanism to AML
By Nicola Miller, RARE Revolution
23 March 2026
Turning point: FORTIFY phase 3 study for limb-girdle muscular dystrophy
By Nicola Miller, RARE Revolution
1 December 2025
Personalised treatments in sight for ADH1
By Nicola Miller, RARE Revolution
24 November 2025
IN the round
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Withdrawal of USAID is fanning winds of entrepreneurial change across Africa
By CONTRIBUTOR
23 February 2026
Macau first: a scalable entry route for paediatric orphan drugs into Greater China
By CONTRIBUTOR
15 December 2025
MexVar: Helping to increase the scientific independence of Mexico
By Julie Penfold, RARE Revolution
6 October 2025
From songlines to science: Bridging healthcare and Indigenous culture
By Emma Bishop, RARE Revolution
14 July 2025
IN the spotlight
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Programming the future of rare disease: ABYA Genomics’ AI revolution
By Nicola Miller, RARE Revolution
26 January 2026
Revolutionising clinical trials: One2Treat’s patient-centric approach to drug development
By Nicola Miller, RARE Revolution
4 August 2025
AlphaRose Therapeutics on doing things differently
By Julie Penfold, RARE Revolution
23 June 2025
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