Houston we have a problem: NASA-inspired strategies for rare disease
Michael Wilbur discusses how many scientific advances have come out of the space programme that can be strategies for rare disease.
π Houston, we have a problem: NASA-inspired strategies for rare diseases! π Let's unite to advocate for the rare disease community! rarerevolutionmagazine.com/rare-insider...
#RareDisease #Innovation #Research #PublicHealth #NASA #Healthcare
30.06.2025 10:24 β π 1 π 1 π¬ 0 π 0
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Dr Kate Cameron on championing diversity in research sampling
Cytochroma is championing diversity in research sampling by representing men and women from different genetic backgrounds.
Exciting advancements in tissue engineering! Cytochroma is developing animal-free mini organs from stem cells. Watch Kate's interview: rarerevolutionmagazine.com/rare-insider... #TissueEngineering #StemCells #Innovation #RareDiseases #Cytochroma
30.06.2025 10:24 β π 1 π 1 π¬ 0 π 0
incognito: the secret life of a...healthcare data CEO
I have been at the centre of patient and community work within rare disease for over a decade and a digital health innovator
A digital health entrepreneur launched an AI venture after her daughter's rare diagnosis to empower those with chronic conditions. ππ‘ #HealthcareLeadership #AI #RareDiseases #EmpathyDrivenTech rarerevolutionmagazine.com/rare-insider...
30.06.2025 10:24 β π 1 π 1 π¬ 0 π 0
Helene Cederroth: Solving the unsolvable - A revolutionary new model for diagnosing rare diseases
Interview by Emma Bishop, RARE Revolution insider, featuring Helene Cederroth, founder and CEO, Wilhelm Foundation
Exciting news! The Undiagnosed Hackathon is transforming rare disease diagnosis. Watch a sneak peek at Helen Cederroth's interview: rarerevolutionmagazine.com/rare-insider... #RareDiseases #MedicalInnovation #UndiagnosedHackathon #GlobalCollaboration #Hope
23.06.2025 14:32 β π 1 π 1 π¬ 0 π 0
If you havenβt come across the new title RARE Revolution insider itβs a great time to subscribe with 25% off.
24.06.2025 21:29 β π 0 π 0 π¬ 0 π 0
Jenifer Ngo Waldrop of Rare Disease Diversity Coalition (RDDC)
Women in Rare: Jenifer Ngo Waldrop of Rare Disease Diversity Coalition (RDDC) With expertise in strategic planning
Championing equity in rare disease advocacy! Jenifer Ngo Waldrop of the RDDC is driving change to reduce health disparities. Read her inspiring journey here: rarerevolutionmagazine.com/rare-insider... #RareDisease #HealthEquity #RDDC
24.06.2025 08:51 β π 1 π 1 π¬ 0 π 0
βOur goal is to print a kidney in 24 hoursβ
Vidmantas Ε akalys is CEO of Vital 3D, a company that is working towards its long-term goal of printing a kidney in 24 hours.
The future of organ transplants is here! Scientists aim to bioprint a functional kidney in just 24 hours. Could this transform healthcare? Read more: rarerevolutionmagazine.com/our-goal-is-... #Bioprinting #MedicalInnovation #FutureOfHealthcare
24.06.2025 08:51 β π 2 π 1 π¬ 0 π 0
Capturing real-world data: βthe right data, at the right time, in the right wayβ
Michelle Conway Capturing discusses real-world data: βthe right data, at the right time, in the right wayβ.
Real-world data is revolutionizing healthcare! Capturing the right data can drive better outcomes and accelerate breakthroughs. Learn more here: rarerevolutionmagazine.com/capturing-re... #RealWorldData #HealthcareInnovation #DataDrivenCare
24.06.2025 08:51 β π 1 π 1 π¬ 0 π 0
A new method of peptide synthesis may be the key to a greener future for pharma
Origin Peptides want to revolutionise the peptide market, which they are doing via an approach that is βgreener, cheaper and fasterβ.
Dr. Sara ten Have discusses the environmental impact of peptides in drug development. Origin Peptides aims to revolutionise the market with a "greener, cheaper, and faster" approach. Read her full article here: rarerevolutionmagazine.com/a-new-method...
24.06.2025 08:52 β π 1 π 1 π¬ 0 π 0
Rare Revolution
Rare Revolution - Special Ed 016
Our #RareDiseaseDay edition is now live. Gearing up for another rare disease day that elevates this incredible community editions.rarerevolutionmagazine.com/html5/reader...
24.02.2025 08:35 β π 4 π 0 π¬ 0 π 1
LinkedIn
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Excited to share this article about the work the wonderful Wayne Danter has been doing for us at Action for XP.
Calling out for partners to join us in the next phase of this important research project. Get in touch if you would like to find out more.
www.actionforxp.org/news/the-inf...
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The Adult and Child Center for Outcomes Research and Delivery Science (ACCORDS) focuses on health services research for real world impact. Supported by the University of Colorado School of Medicine and Children's Hospital Colorado.
she/her
Had 50k on Twitter π (not really)
A politically independent monthly current affairs, culture & ideas magazine
Established 1995
Editor: Alan Rusbridger
@arusbridger.bsky.social; https://prospectmagazine.co.uk
The Yeast journal publishes articles and reviews on the most significant developments in unicellular fungi biology.
https://onlinelibrary.wiley.com/journal/10970061
Posts by @melaniadangiolo.bsky.social
#Yeast #mycology #fungi #microbiology
Raising awareness of FOXP2 & #ChildApraxiaSpeech, a rare neurological speech disorder.
#14daysofdvd @GivingVoice Award.
Medics4RD Patient Ambassador
Trustee Mikey's Wish Foundation
Human Geneticist/Genomicist working on Mendelian & rare genetic disorders to enable Precision Medicine. Opinions are my own.
@cgonzagaj everywhere π¦π¦£βοΈπ§΅
Bluesky shadowbanned me
Follow my alt account
Current yeast articles everyday :)
Follow our Feed #yeast #saccharomyces
:)
From Molecular Genetics Lab, USACh
Partnerships & Community Manager for Medics For Rare Disease. This is my personal account and my views are my own. Letβs make #Raresky a thing
π§ 𧬠Neuroscientist. Looking for new medicines for #CDKL5, #SCN1A, #SHANK3, #DHPS and other neurological #RareDiseases with #epilepsy
Associate Director of Bioinformatics and Software at Illumina. Unleashing the power of the genome through SW and AI. #PrecisionMedicine #Cancer #MECFS #RareDisease
Freelance science writer with expertise in neuroscience, biology, university communications, higher ed teaching & student support. She/her #scicomm
https://www.rachelhendersonscience.com/
Est. 1929, JAX is a non-profit scientific research institute specializing in genetics, genomics & mouse models of disease.
USA, Japan, China: https://www.jax.org/
We grow science with words. The only Asian American-run science newsroom: independent, nonprofit, led by Gen-Z!
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CEO of Medics for Rare Disease. I want to see a world in which there is equitable healthcare for everyone. Trying to play my part in making this happen. Personal account. Views are my own. Trying not to burn out before #RareDiseaseDay
Staying ahead in the world of rare disease isnβt a luxuryβ¦itβs a necessity. RARE Revolution insider is a life sciences and rare disease publication for professionals, bridging the divide between industry and the community you serve.
Ready to apply my experience as Non-executive Director and/or Consultant. www.markflannagan.com
Part-time CEO of https://upcyclemcf.org/
Interested in change, not status quo.
I share #ChronicIllness, #ChronicPain, #disability & #MentalHealth info from VARIOUS #perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy Open to constructive chat, will block overly opinionated people.
https://www.achronicvoice.com/
Nature Genetics is a monthly journal publishing high impact research in genetics and genomics. Part of @natureportfolio.bsky.social
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