miércoles, 1 de abril de 2026
Using RNA to treat heart attacks
https://www.nih.gov/news-events/nih-research-matters/using-rna-treat-heart-attacks
Using RNA to treat heart attacks
At a Glance
An RNA-based lipid nanoparticle therapy helped the heart recover from a heart attack in animal studies.
The results suggest a new strategy for treating heart attacks and repairing damage to the heart.
Scientists identify proteins tied to food tolerance
https://www.nih.gov/news-events/nih-research-matters/scientists-identify-proteins-tied-food-tolerance
Scientists identify proteins tied to food tolerance
At a Glance
Scientists identified parts of proteins that interact with immune cells and allow mice to tolerate certain foods rather than have an allergic reaction.
The findings enhance our current understanding of food tolerance and may lead to new therapies for people with food allergies.
SuperAgers show unique cell signatures in the brain
https://www.nih.gov/news-events/nih-research-matters/superagers-show-unique-cell-signatures-brain
At a Glance
Researchers linked neuron creation to exceptional recall and memory in older adults.
Understanding how new neurons are created in adulthood could help lead to interventions that promote healthy aging.
April is Move More Month! Kick off April by celebrating National Walking Day on April 1!
https://www.heart.org/en/-/media/Healthy-Living-Files/Fitness/Move_More_Toolkit.pdf?sc_lang=en&utm_medium=email&utm_source=govdelivery
National Walking Day is April 1.
https://www.heart.org/en/healthy-living/fitness?utm_medium=email&utm_source=govdelivery
Want to Learn More about the Health Benefits of Physical Activity?
Explore the Physical Activity Guidelines for Americans!
https://odphp.health.gov/our-work/nutrition-physical-activity/physical-activity-guidelines/about-physical-activity-guidelines?utm_medium=email&utm_source=govdelivery
Physical activity is key to improving the health of the nation. Based on the latest science, the Physical Activity Guidelines for Americans is a flagship resource for health professionals and policymakers that provides recommendations on how everyone can improve their health through regular physical activity.
Learn ways to help people understand the benefits of physical activity and how to make it a part of their regular routine.
Adults need at least 150 minutes of moderate-intensity aerobic activity, like brisk walking or fast dancing, each week. Adults also need muscle-strengthening activity, like lifting weights or doing push-ups, at least 2 days each week.
Youth ages 6 through 17 need at least 60 minutes of moderate-to-vigorous activity to attain the most health benefits from physical activity. They also need activities that make their muscles and bones strong, like climbing on playground equipment, playing basketball, and jumping rope.
Move more and sit less. There is a strong relationship between increased sedentary behavior and increased risk of heart disease, high blood pressure, and all-cause mortality. All physical activity, especially moderate-to-vigorous activity, can help offset these risks.
Any amount of physical activity has some health benefits. Americans can benefit from small amounts of moderate-to-vigorous physical activity spaced throughout the day.
Activity can have immediate health benefits. For example, physical activity can reduce anxiety and blood pressure and improve quality of sleep and insulin sensitivity. It can also help manage conditions that Americans already have. For example, physical activity can decrease pain for those with osteoarthritis, reduce disease progression for hypertension and type 2 diabetes, reduce symptoms of anxiety and depression, and improve cognition for those with dementia, multiple sclerosis, ADHD, and Parkinson’s disease.
Check out resources to help Move Your Way!
https://odphp.health.gov/our-work/nutrition-physical-activity/move-your-way-community-resources?utm_medium=email&utm_source=govdelivery
World Health Assembly 2026 Seventy-ninth World Health Assembly 18–23 May 2026
https://www.who.int/about/governance/world-health-assembly
World Health Assembly. Geneva, Switzerland | 18-23 May 2026
Rare Diseases Forum 2026 21 April 2026
https://events.theparliamentmagazine.eu/event/rare-diseases-forum/
The Rare Diseases Forum 2026 comes at a crucial time for EU health policy. With over 30 million Europeans affected, momentum is growing for a more coordinated response. In 2025, the European Parliament called for a comprehensive EU Action Plan on Rare Diseases, urging stronger Member State commitment. Upcoming reforms to EU pharmaceutical law and the HTA regulation will reshape access to orphan drugs.
Meanwhile, initiatives like the European Health Data Space (EHDS), European Partnership on Rare Diseases (ERDERA), and Joint Action for Rare Diseases Research and Innovation (JARDIN) aim to drive progress in research, diagnosis, and care. As these efforts advance, key challenges remain – especially around access, innovation, and cross-border collaboration. What policy levers must the EU activate now to ensure no patient is left behind?
European Health Data Space Regulation (EHDS)
https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space-regulation-ehds_en
One year after entering into force on 26 March 2025, the European Health Data Space (EHDS), part of the European Strategy for Data, has moved into its implementation phase. Work is underway to establish governance, technical standards and infrastructure for cross-border health data sharing, with the aim of enabling access to and use of primary and secondary health data across the EU.
For people living with rare diseases, the EHDS could be transformative by supporting earlier diagnosis and accelerating research and access to new therapies. While still at an early stage, initiatives such as HealthData@EU and EU-funded projects like TEHDAS2 are beginning to lay the foundations for more harmonised data use.
With key implementing acts expected by March 2027, the coming year will be critical for advancing the rollout of the EHDS. EURORDIS also looks forward to participating in a consultation session on 12 May with Commissioner for Health Olivér Várhelyi as part of the Commission’s Implementation Dialogue on the European Health Data Space.
https://tehdas.eu/
EURORDIS’ response to the Midterm Review of the European Strategy for the Rights of Persons with Disabilities 2021-2030 February 2026
EURORDIS’ response to the Midterm Review of the European Strategy for the Rights of Persons with Disabilities 2021-2030
February 2026
EURORDIS Response: The EU Strategy for the Rights of Persons with Disabilities 2021-2030. A contribution prepared by EURORDIS and the members of its Social Policy Action Group (SPAG)
EURORDIS, in collaboration with the members of its Social Policy Action Group (SPAG), has published its response to the European Commission’s midterm review of the European Strategy for the Rights of Persons with Disabilities 2021-2030.
https://www.eurordis.org/publications/midterm-review-of-european-strategy-rights-of-persons-with-disabilities-response/
Adéla Odrihocká, rare disease advocate and member of EURORDIS’ Social Policy Action Group (SPAG), met with the European Commissioner for Equality, Hadja Lahbib, on 20 March during a Youth Policy Dialogue, contributing to discussions shaping the future of the EU Strategy for the Rights of Persons with Disabilities. The exchange highlighted the importance of ensuring that the voices of people living with disabilities are reflected in EU policymaking.
https://www.linkedin.com/in/ad%C3%A9la-odrihock%C3%A1-855091198/
https://www.linkedin.com/in/hadja-lahbib/
Within a working group, Adéla highlighted key barriers to employment, including the lack of cross-border recognition of disability status, limited access to support services, and inaccessible recruitment processes. These priorities align with EURORDIS’ recent contribution, developed with the Social Policy Action Group, to the European Commission’s midterm review of the Strategy for the Rights of Persons with Disabilities. The contribution calls for improved disability assessment and recognition across Member States, stronger support for independent living, and a more effective EU Disability Card.
According to findings published last year from a EURORDIS’ Rare Barometer survey, eight in 10 people living with a rare disease also live with a disability.
https://www.eurordis.org/rare-barometer-findings-daily-life-survey/
REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL
Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL amending Regulations (EU) 2017/745 and (EU) 2017/746 as regards simplifying and reducing the burden of the rules on medical devices and in vitro diagnostic medical devices, and amending Regulation (EU) 2022/123 as regards the support of the European Medicines Agency for the expert panels on medical devices and Regulation (EU) 2024/1689 as regards the list of Union harmonisation legislation referred to in its Annex I
https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:52025PC1023
The European Commission has finalised translations of its proposals to revise the EU’s Medical Devices Regulation (MDR) and In Vitro Diagnostic Medical Devices Regulation (IVDR), allowing formal discussions to begin in the European Parliament and the Council. These regulations set the rules for how medical devices – including diagnostic tests, implants and digital health tools – are assessed and approved for use in the EU.
Policymakers have signalled their intention to move quickly, although no clear timeline for agreement has been set. The Cypriot Presidency has emphasised the need to simplify the regulatory framework while maintaining safety and quality standards.
Changes to the IVDR could support the development and availability of specialised diagnostic tests, helping to shorten the diagnostic journey. Revisions to the MDR could also improve access to innovative assistive and therapeutic technologies, and orphan devices.
EURORDIS welcomes European Parliament draft report calling for a European Action Plan on Rare Diseases March 2026
https://www.eurordis.org/response-draft-proposal-for-action-plan/
EURORDIS welcomes European Parliament draft report calling for a European Action Plan on Rare Diseases
March 2026
5 March 2026, Brussels – EURORDIS–Rare Diseases Europe welcomes the draft report presented by MEP Nicolás González Casares, Member of the European Parliament Committee on Public Health (SANT), calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework.
DRAFT REPORT with recommendations to the Commission on a European Union rare disease action plan (2025/2130(INL)) Committee on Public Health Rapporteur: Nicolás González Casares
https://www.europarl.europa.eu/doceo/document/SANT-PR-785192_EN.html
On 2 March, MEP Nicolás González Casares presented a draft own-initiative legislative report to the European Parliament’s Public Health (SANT) Committee, calling on the European Commission to propose legislation establishing a European framework for rare diseases. The report highlights that, among the 6,000 to 8,000 identified rare diseases affecting an estimated 27 to 36 million people in the EU, around 95% still lack an authorised treatment.
The report calls for a comprehensive approach addressing the full rare disease pathway, including improved coordination of research, faster and more equitable diagnosis, better access to therapies, strengthened support for patients and families, and enhanced data sharing, notably through the European Health Data Space. It also emphasises the need to reduce inequalities across Member States and reinforce the role of the European Reference Networks.
EURORDIS welcomed the report as an important step forward in the long-standing effort to establish an EU Action Plan for Rare Diseases. “We are very happy with this draft report, which reflects a growing recognition in Europe that rare diseases cannot be addressed through fragmented national policies alone. The scale of the challenge demands a coordinated European approach,” said Valentina Bottarelli, Head of Policy & Public Affairs at EURORDIS.
MEPs on the SANT Committee had until 26 March to submit amendments to the draft report. A vote in Committee is expected in June, followed by a plenary vote in the European Parliament, likely in September.
Olivér Várhelyi presents Biotech Act I to parliamentary committee
https://control.eup.glcloud.eu/content-manager/content-page/20260319-1100-COMMITTEE-SANT?audio=fr&lang=fr&logo=true&multicast=true
On 19 March, during a joint meeting of the SANT and ITRE committees, Commissioner for Health and Animal Welfare, Olivér Várhelyi, presented part one of the Biotech Act, followed by an exchange with Members. Published in December 2025, Biotech Act I aims to strengthen Europe’s biotechnology and biomanufacturing sectors by supporting innovation, simplifying regulatory frameworks and boosting investment.
The discussion highlighted growing concerns about Europe’s declining competitiveness in biotechnology, particularly in clinical trial activity. The EU’s global share has fallen from 18% to 9%, while China’s has risen to around 30%.
The proposed Act seeks to address these challenges by accelerating clinical trial approvals, especially for multi-country trials, streamlining regulatory procedures, and promoting the use of health data and artificial intelligence. It also aims to close the investment gap, with the European Investment Bank expected to mobilise up to €10 billion to support biotech scale-ups.
MEPs also stressed the decline in the share of orphan medicines developed by EU-based companies, reinforcing calls to strengthen Europe’s capacity to deliver innovative treatments more rapidly and equitably across Member States.
The next steps include committee reports (by both SANT and ITRE), that will shape the Parliament’s position, while the Council carries out its own parallel examination.
https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/14627-Biotech-Act_en
Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis March 2026
Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis
March 2026
For many people living with rare diseases, the hardest part of their illness isn’t the treatment. It’s the wait for a diagnosis. Symptoms appear. Appointments follow. Tests are run. Specialists are consulted. And still, for what can be years, there are no answers.
https://www.eurordis.org/how-europe-can-lead-way-rare-disease-diagnosis/
EURORDIS supports EU Member States’ efforts to secure reintroduction of health NGOs’ operating grants March 2026
EURORDIS supports EU Member States’ efforts to secure reintroduction of health NGOs’ operating grants
March 2026
4 March 2026, Brussels – EURORDIS–Rare Diseases Europe, together with fellow members of the EU4Health Civil Society Alliance, reiterates its call for the European Commission to reinstate operating grants for health non-governmental organisations, as political momentum grows among EU Member States for their return from 2026 onwards.
https://www.eurordis.org/eurordis-supports-member-states-efforts-operating-grants-reintroduction/
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