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Belén Tarrafeta

@belentarrafeta.bsky.social
542 followers 250 following 114 posts

Pharmaceutical Policies. Access to Medicines. Quality of Medicines. Global Health. Institute of Tropical Medicines in Antwerp. Views are only mine. "No reserves del mundo solo un rincón tranquilo" Mario Benedetti

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Reposted by Belén Tarrafeta
Veronika J. Wirtz @verowirtz.bsky.social · 26/09/2026
Agreements with Pfizer and Eli Lilly include tariff protections, overseas pricing inducements and broad confidentiality clauses. www.washingtonpost.com/politics/202...
washingtonpost.com
Secret contracts reveal undisclosed terms in Trump’s drug-pricing deals
Agreements with Pfizer and Eli Lilly include tariff protections, overseas pricing inducements and broad confidentiality clauses.
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Reposted by Belén Tarrafeta
Thomas Piggott MD PhD @twpiggott.bsky.social · 25/09/2026
There’s increasing discussion about forced treatment in Ontario; I’m doing a series over on Instagram around it. Here’s part 1: have we been here before?
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Thomas Piggott MD PhD @twpiggott.bsky.social · 25/09/2026
Part 2: what does the evidence on forced treatment actually say?
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Kristof Decoster @kristofdecoster.bsky.social · 25/09/2026
Via Stat: www.statnews.com/pharmalot/20... via @statnews.com
statnews.com
Indonesian ruling against 'patent evergreening' by pharma industry sends critical message, patient advocates say
A recent court decision in Indonesia sends an important message to other countries to challenge the pharma industry's use of "patent evergreening," patient advocates say.
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Alexandra Phelan 余雪莲 @alexandraphelan.bsky.social · 23/09/2026
Spain has nominated María Neira for WHO Director-General following advocacy from civil society to focus on environmental health, including climate risks, and equity healthpolicy-watch.news/spain-to-nom...
healthpolicy-watch.news
EXCLUSIVE: Spain To Nominate María Neira As Candidate For WHO Director-General - Health Policy Watch
Spain is set to nominate María Neira for the WHO Director-General election ahead of Thursday's statutory deadline, sources close to matter told Health Policy Watch. The submission expands the candidat...
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Veronika J. Wirtz @verowirtz.bsky.social · 23/09/2026
DHS plans to spend up to $2M on Boston Dynamics’ Spot robot dogs for ICE. Do you trust ICE with Spot's "limitless data collection capacity"? Take action, inform others what is happening & why you disagree with Boston Dynamics' intent to have a contract with ICE. www.nbcboston.com/video/multim...
nbcboston.com
Protesters demand Boston Dynamics deny ICE their robot dogs
Immigration and Customs Enforcement could soon deploy four-legged robots made by Massachusetts-based Boston Dynamics, a move that is raising concerns among some activists about surveillance, control a...
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Doctors Without Borders / Médecins Sans Frontières (MSF) @msf.ca · 17/09/2026
Children must be included in #Ebola treatment & prevention research, as they are disproportionately affected by the outbreak in the #DRC. Yet many barriers restrict their access to medical countermeasures. Red our statement & @thelancet.com commentary: www.doctorswithoutborders.ca/democratic-r...
doctorswithoutborders.ca
Democratic Republic of Congo: Children must be included in Ebola treatment and prevention research | Doctors Without Borders / Médecins Sans Frontières (MSF ...
MSF urges critical action to ensure children access Bundibugyo virus treatment and PEP research, as they face disproportionately high risks in the current DRC outbreak.
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POLITICO Europe @politico.eu · 30/08/2026
A group of Palestinian students and researchers is unlikely to take up scholarships at Belgian universities this fall due to disagreements in PM Bart De Wever’s coalition government over evacuating people from Gaza. 🔗 www.politico.eu/article/belg...
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FlyBase @flybase.bsky.social · 21/08/2026
Full text of the letter.
CORRESPONDENCE | 18 August 2026

Treat biological databases as infrastructure, not projects

By

Neil Hall  Earlham Institute and ELIXIR-UK, Norwich, UK.
Katja Röper, University of Cambridge, Cambridge, UK.
Valerie Wood  University of Cambridge, Cambridge, UK.
Paul Nurse  Royal Society, London, UK.

Many modern biology studies rely on curated databases that scientists hardly notice until they are gone. PomBase, the knowledge hub for the yeast Schizosaccharomyces pombe, has lost its long-term support from UK funder Wellcome. Another knowledge portal, FlyBase — for research on Drosophila fruit flies — lost funding for its curation team when awards from the US National Institutes of Health (NIH) were cut in 2025. And after a funding gap, the human gene-nomenclature database HGNC secured one NIH award in 2024.
Three problems drive this fragility: funders have stopped providing open-ended infrastructure support; budgets have not scaled with demand; and universities reward publications over stewardship. UK government funding for biological data resources has stagnated at £7 million (US$9.5 million) a year since 2024, despite the increasing reliance of studies in genomics, drug discovery and precision medicine on curated data. Curation expertise, once lost, cannot be rebuilt quickly.
We urge funders to treat biological databases as a shared infrastructure, as they do biobanks and particle accelerators. Without sustained investment, the life sciences risk building an ambitious future on a collapsing foundation.

Nature 656, 786 (2026)

doi: https://doi.org/10.1038/d41586-026-02575-5
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Belén Tarrafeta @belentarrafeta.bsky.social · 30/07/2026
"Resistance to public health measures was rarely the product of ignorance alone. More often, it reflected longstanding experiences of insecurity, exclusion and unequal access to health care. Building trust therefore requires much more than delivering information". www.nature.com/articles/d44...
nature.com
Why the fight against Bundibugyo Ebola depends on trust
With no vaccine or cure for Bundibugyo Ebola, containment depends as much on trust as on epidemiology. Yet the work that builds that trust remains chronically underfunded.
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EFE Noticias @efe.com · 23/07/2026
VIDEO | La República Democrática del Congo (RDC) eleva a 999 el número de muertes confirmadas por el brote de ébola declarado el 15 de mayo. Según el último boletín del Instituto Nacional de Salud Pública, hasta el momento se han registrado 2.473 casos confirmados.
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EFE Noticias @efe.com · 21/07/2026
El balance de muertos por el doble terremoto de magnitud 7,2 y 7,5 ocurrido hace casi un mes en Venezuela asciende a 5.278, luego de que las autoridades sumaran setenta fallecimientos.
efe.com
Suben a 5.278 la cifra de muertos por el doble terremoto en Venezuela - EFE
El balance de muertos por el doble terremoto de magnitud 7,2 y 7,5 ocurrido hace casi un mes en Venezuela ascendió a 5.278, luego de que las autoridades sumaran setenta fallecimientos.
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Pedro D @pierrenodoyuna.bsky.social · 21/07/2026
Qué tristeza (y más cosas). Viví en Bologna un año y estuve cerca de quedarme para siempre. Ciudad abierta a todes, inclusiva, respetuosa con quien fuera diferente. El punkabestia y su perrazo compartían banco en el parque con la abuelita... Ciudad apodada "la roja" no sólo por sus edificios de +
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Belén Tarrafeta @belentarrafeta.bsky.social · 16/07/2026
De acuerdo con el diagnóstico del artículo: avanzamos hacia mayor opacidad y necesitamos una estrategia común de transparencia entre los países que más invierten en medicamentos innovadores. Pero conviene separar dos problemas relacionados: precio y entrada en el mercado (hilo).
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Tedros Adhanom Ghebreyesus @drtedros.who.int · 18/07/2026
Two months into the #Ebola outbreak in #DRC, intense transmission in Ituri is our primary concern. Health interventions alone will not stop this outbreak. Urgent political action is needed to secure access, protect health workers and scale up the response. Even a temporary ceasefire would help.
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Javier Padilla @javierpadillab.bsky.social · 17/07/2026
Esta semana la Comisión Interministerial de Precio de Medicamentos decidió la no financiación de dos medicamentos para el Alzheimer. Ayer Lilly, una de las empresas farmacéuticas que comercializan estos medicamentos, sacó un comunicado (bastante sorprendente -por decir algo-, he de decir).
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Belén Tarrafeta @belentarrafeta.bsky.social · 16/07/2026
De acuerdo con el diagnóstico del artículo: avanzamos hacia mayor opacidad y necesitamos una estrategia común de transparencia entre los países que más invierten en medicamentos innovadores. Pero conviene separar dos problemas relacionados: precio y entrada en el mercado (hilo).
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Salud por Derecho @saludporderecho.bsky.social · 16/07/2026
Analizamos cómo esta presión está empujando a más gobiernos hacia la opacidad y qué riesgos plantea para el acceso a los medicamentos. saludporderecho.org/la-carrera-p...
saludporderecho.org
La carrera por ocultar el precio de los medicamentos
El 12 de mayo de 2025, la Administración de Donald Trump firmó una orden ejecutiva que instauró en Estados Unidos un sistema de precios de «nación más favorecida» (Most Favored
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Salud por Derecho @saludporderecho.bsky.social · 16/07/2026
Estados Unidos quiere rebajar el precio de los medicamentos tomando como referencia los precios más bajos que pagan las economías más desarrolladas. La industria farmacéutica ha respondido amenazando con retrasar o dejar de comercializar nuevos medicamentos.
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Raffaella Ravinetto @rravinetto.bsky.social · 04/07/2026
Can we really ignore this? #migrants #humans #Europe www.linkedin.com/posts/dr-apo...
linkedin.com
#notonourname #humanity | Dr. Apostolos Veizis
Few years ago in Chios island a little 1-year old Syrian boy was living with his parents in a tent at the entrance to Souda camp. He was bitten by a rat, on his left arm. His parents took him to the ...
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Reposted by Belén Tarrafeta
Adam R Houston @healthlawadamh.bsky.social · 03/07/2026
"WHO adds first diagnostic test for Ebola Bundibugyo virus to its Emergency Use Listing" www.who.int/news/item/02...
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Doctors Without Borders / Médecins Sans Frontières (MSF) @msf.ca · 03/07/2026
Severe malnutrition is on the rise among children in southern #Afghanistan, and an alarming number have already been admitted so far this year. We’re worried that rising needs will continue to outpace the response. Ana Lilia Banda, our Medical Coordinator, reports:
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Juan Luis CG 🇪🇺🇪🇸 @jldecastellvi.bsky.social · 28/06/2026
Os recuerdo esto: no llevéis cosas a centros de recogida. Es mil veces mejor donar dinero a cualquier entidad que esté trabajando sobre el terreno y sea de vuestra confianza.
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DEGOUGES.NET @degouges2024.bsky.social · 28/06/2026
🤚📺▶️| @leilana.bsky.social en @publico.es . ¡Bravo, Leïla! Como siempre... 🔗: www.youtube.com/shorts/ZWtMG...
youtube.com
“Peacewashing”: música para blanquear genocidios, por Leila Nachawati
YouTube video by Diario Público
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EL PAÍS @elpais.com · 28/06/2026
La ofensiva anti LGTBIQ+ avanza en el continente africano, alentada por grupos ultraconservadores occidentales y otros extremistas. Decenas de huidos encuentran refugio en un discreto albergue en Costa de Marfil y su relato es una radiografía de la violencia que les persigue
elpais.com
Un refugio en el que amar sin ser juzgado: jóvenes gays escapan a Costa de Marfil de la represión homófoba en África | Especial
La ofensiva anti LGTBIQ+ avanza en el continente, alentada por grupos ultraconservadores occidentales y otros extremistas. Decenas de huidos encuentran refugio en un discreto albergue en Abiyán y su relato es una radiografía de la violencia que les persigue
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Pampa García Molina @pampa.bsky.social · 14/06/2026
La última semana de colegio en Madrid va a ser una salvajada
Teo se muere de calor en junio en el cole 36 grados en Madrid 19 de junio
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The Conversation ES @es.theconversation.com · 07/06/2026
El test Apgar permite evaluar las condiciones de los recién nacidos, pero la palabra no es el acrónimo que mucha gente cree. Su creadora Virginia Apgar nació un día como hoy de 1909.
theconversation.com
Virginia Apgar, la anestesióloga que ha salvado la vida a millones de neonatos
El test Apgar permite evaluar las condiciones de los recién nacidos, pero la palabra no es el acrónimo que mucha gente cree.
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Veronika J. Wirtz @verowirtz.bsky.social · 06/06/2026
"Several of the researchers said they believed they were removed partly because the association feared repercussions from the Trump administration." “It is no longer enough to stand idly by [...]” editorial.https://www.nytimes.com/2026/06/05/well/ada-conference-diabetes-trump.html
nytimes.com
Police Remove Diabetes Experts From Conference for Distributing Critique of Trump Administration
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Tedros Adhanom Ghebreyesus @drtedros.who.int · 31/05/2026
My visit in Bunia continues. I hope to meet as many #Ebola responders as possible. Tto people of Ituri: @who.int & partners are here to stay. We are here to listen. We are here to support you, your communities & government end this outbreak. To help you rebuild your health system. You are not alone
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Alexandra Phelan 余雪莲 @alexandraphelan.bsky.social · 25/05/2026
Some outbreaks ago, DR Congo Ministry of Public Health had an incredible data sharing effort on then-twitter. Leadership’s changed but DRC continues to set the standard with this excellent dashboard for the current Ebola Bundibugyo outbreak H/T @boghuma.bsky.social sante.gouv.cd/epidemie/ebo...
sante.gouv.cd
Ministère de la Santé Publique, Hygiène et prévoyance sociale
Site Officiel du Ministère de la Santé Publique, Hygiène et prévoyance sociale
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Trish Greenhalgh @trishgreenhalgh.bsky.social · 23/05/2026
Every summer I repost this article on how to spot drowning. Please read it and pass on. In the last few years I’ve had SIX messages from people who saved a kid’s life after clicking on the link from my feed. slate.com/technology/2...
slate.com
Drowning Doesn’t Look Like Drowning
Drowning is not the violent, splashing call for help that most people expect.
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Belén Tarrafeta @belentarrafeta.bsky.social · 20/05/2026
No comments. Obama’s 2014 announcement of US intervention in response to the Ebola outbreak in West Africa obamawhitehouse.archives.gov/the-press-of... Trump's 2026 respose to the current Ebola PHEIC in Central Africa www.state.gov/releases/off...
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Democracy Now! @democracynow.org · 18/05/2026
Public health professor and emergency room physician Dr. Craig Spencer, who is an Ebola survivor, says this Ebola outbreak could be the fourth largest in history.
democracynow.org
As WHO Declares Ebola Outbreak a Global Health Emergency, Did USAID Cuts Worsen the Crisis?
The World Health Organization declared a global health emergency on Saturday due to the rapid spread of Ebola virus in the Democratic Republic of Congo and Uganda. Ebola causes severe hemorrhagic fever and is often fatal. There's no approved vaccine for...
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Tedros Adhanom Ghebreyesus @drtedros.who.int · 17/05/2026
After having consulted the #DRC & #Uganda where the #Ebola disease caused by Bundibugyo virus is known to be currently occurring, I determine that the epidemic constitutes a public health emergency of international concern (PHEIC), as defined in the provisions of IHR. My statement: bit.ly/4wGGiwX
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Guillermo Peris 🧬💻 @waltzingpiglet.bsky.social · 21/04/2026
Sanidad certifica que la homeopatía es placebo y que puede constituir un riesgo para la salud. elpais.com/sociedad/202...
elpais.com
Sanidad certifica que la homeopatía es placebo y que puede constituir “un riesgo” para la salud
El ministerio publica un informe que revisa tres lustros de estudios sobre una pseudociencia que mueve más de 30 millones al año en España y que podrá seguir comercializándose
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Hyo Yoon Kang 강효윤 @hyoyoonkang.bsky.social · 14/04/2026
This is a comprehensive investigation of patent abuse of a Keytruda & the best I've ever seen patent data visualisation of evergreening practices and the resulting thicket until 2046 - another extra twenty years of patent monopoly right h/t @clancyny.bsky.social
icij.org
How Merck uses patents to help maintain Keytruda's exorbitant price - ICIJ
Explore the U.S. patents Merck deploys to stymie competition and keep revenues for its blockbuster cancer drug flowing as long as possible.
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Raffaella Ravinetto @rravinetto.bsky.social · 31/03/2026
#African Central Medical can and should be strategic partners in national #pharmaceutical policy & #HealthSystem governance, coshaping #availability & #affordability of essential #medicines toward #UHC @belentarrafeta.bsky.social @itmantwerp.bsky.social @who.int www.tandfonline.com/doi/full/10....
tandfonline.com
From supply to strategy: leveraging central medical stores experiences and information for health system strengthening
The availability and affordability of essential medicines and other health products are critical to building resilient health systems and achieving Universal Health Coverage (UHC). In many Francoph...
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Reposted by Belén Tarrafeta
Melissa Barber @mbarber.bsky.social · 30/03/2026
Today, MSF is going public with something we've been fighting behind closed doors for months: Gilead will not sell us their new HIV drug, lenacapavir. The sticking point isn't even price, they just refuse to sell. Open letter linked + explainer 🧵1/ www.doctorswithoutborders.org/latest/gilea...
doctorswithoutborders.org
Gilead refuses to sell groundbreaking HIV prevention drug to MSF
Blocking humanitarian organizations from accessing a medical breakthrough puts vulnerable people across the world in danger.
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Reposted by Belén Tarrafeta
Raffaella Ravinetto @rravinetto.bsky.social · 28/03/2026
An excellent reflection in the Indian Journal of Medical Ethics (IJME) about the challenges to #quality of #medicines in #India, from an industrial #policy perspective @daktre.bsky.social @kristofdecoster.bsky.social @belentarrafeta.bsky.social ijme.in/articles/the...
ijme.in
The quality challenge for generic medicines in India: An industrial policy-sensitive perspective
<!-- Body --> <div class="container-fluid"> <div class="row-fluid"> <div class="span12"> <!-- Head end's here --><!-- Section Name --> <h3>RESEAR ...
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WHO @who.int · 29/03/2026
Children born in low-income countries are 13 times more likely to die before the age of 5 than in higher-income countries. This is unacceptable. We must break the chain of health inequity and give all children a fair chance to live long and healthy lives.
Where your child is born changes how long they are likely to live. Let's be all for equity.
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Tradeoffs @tradeoffs.org · 27/03/2026
Generic drugs now fill nine out of every 10 prescriptions in America. Next month, one of these cheaper, copycat medicines will land before the Supreme Court. We broke down Hikma v. Amarin and its possible consequences. tradeoffs.org/2026/03/26/g...
tradeoffs.org
Generic Drugs Head to the Supreme Court
The justices are set to hear Hikma v. Amarin, a battle over drug patents that could raise costs for patients and change the way generic companies do business.
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Patricia Fernández de Lis @pflis.bsky.social · 22/03/2026
Me encantaría que lo leyerais y comentarais. Para mí, como periodista y por muchos motivos, este reportaje supone el cierre de una etapa y la apertura de otra, llena de oportunidades. Gracias ❤️ elpais.com/ciencia/2026...
elpais.com
Cómo los gigantes de la IA intentaron tomar al asalto el último reducto de la mente humana: las olimpiadas matemáticas
EL PAÍS reconstruye la historia de lo que muchos medios vendieron como “la noticia del año”, y algunos protagonistas califican de “vergüenza”: el supuesto oro olímpico de las grandes tecnológicas, que...
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Cintia Refojo @desayunodudas.bsky.social · 23/03/2026
Muy interesante esto que cuenta @pflis.bsky.social
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Katherine Pettus @kpettus.bsky.social · 13/03/2026
I’ll be speaking on advocacy and ethics.
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Dr Javid Abdelmoneim @intlpresident.msf.org · 05/03/2026
In 2014, I visited eastern DRC, where @msf.org teams were treating sleeping sickness - the only available treatment was a drug so toxic it killed 1 in 20 patients. In 2026 I'm so proud that, thanks to @dndi.org, patients can be cured with a single dose of a groundbreaking new oral drug, acoziborole.
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Médecins Sans Frontières @msf.org · 27/02/2026
Congrats to our partner @dndi.org on the approval of their drug acoziborole to treat sleeping sickness! 🎉 This neglected disease could now be cured with a safe, single-dose pill, rather than complicated, toxic treatments that have previously been used.
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Raffaella Ravinetto @rravinetto.bsky.social · 26/02/2026
#NTDs are uncommon but may be present in #Europe, as mobility & #climate change expand vectors habitat: poor #access to #medicines may leave vulnerable patients untreated & increase risk of local transmission @lancetrh-europe.bsky.social @itmantwerp.bsky.social www.sciencedirect.com/science/arti...
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Veronika J. Wirtz @verowirtz.bsky.social · 15/02/2026
No longer is the FDA a model agency: "The result is that the FDA is soliciting advice after it has decided what to do, rather than deciding what to do after hearing and appropriately considering independent experts’ advice." jamanetwork.com/journals/jam...
jamanetwork.com
Law, Politics, and Expert Panels at the US Food and Drug Administration
This Viewpoint discusses the lawfulness and credibility of the US Food and Drug Administration’s recent move to using expert panels rather than advisory committees for decision-making.
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Katri Bertram @katribertram.bsky.social · 13/02/2026
@themrise.bsky.social 💯 and 🙏 (scroll to the bottom 👇)
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luistarrafeta.bsky.social @luistarrafeta.bsky.social · 11/02/2026
Las tareas infinitas Nos contaba el muy leído Santi que allá por 1935, el filósofo Edmund Husserl tuvo un éxito apabullante con una conferencia en Viena que dio pie al libro «Las crisis de las ciencias europeas y la fenomenología trascendental». Venía a decir —y puedo no ser muy preciso aquí— que…
luistarrafeta.com
Las tareas infinitas
Nos contaba el muy leído Santi que allá por 1935, el filósofo Edmund Husserl tuvo un éxito apabullante con una conferencia en Viena que dio pie al libro «Las crisis de las ciencias europeas y la fenomenología trascendental». Venía a decir —y puedo no ser muy preciso aquí— que la gran diferencia entre la cultura occidental, europea, frente a otras era su búsqueda de «tareas infinitas».
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