Aporte a la rutina de la trinchera asistencial donde los conocimientos se funden con las demandas de los pacientes, sus necesidades y las esperanzas de permanecer en la gracia de la SALUD.
martes, 31 de octubre de 2023
lunes, 30 de octubre de 2023
domingo, 29 de octubre de 2023
sábado, 28 de octubre de 2023
BLOOD CANCER: THE SILENT DISEASE
Blood Cancer: The Silent Disease
By Ivanhoe Broadcast News on October 27, 2023
https://www.ivanhoe.com/medical-breakthroughs/blood-cancer-the-silent-disease/
AUTISM AND SLEEP: PUTTING ISSUES TO BED
Autism and Sleep: Putting Issues to Bed
By Ivanhoe Broadcast News on November 4, 2023
https://www.ivanhoe.com/?p=31670&preview=1&_ppp=13c92ae61a
DIABETES DRUG TO SLOW AGING?
Diabetes Drug to Slow Aging?
By Ivanhoe Broadcast News on November 5, 2023
https://www.ivanhoe.com/?p=31673&preview=1&_ppp=0561107d43
LONG LASTING EFFECTS OF COVID-19: WHO, WHY & HOW?
COVID-19 Long Lasting Effects: Who, Why & How?
By Ivanhoe Broadcast News on November 4, 2023
https://www.ivanhoe.com/?p=31667&preview=1&_ppp=4e203e1aa4
JUST BIRTH NETWORK: BREAKING RACIAL BARRIERS
Just Birth Network: Breaking Racial Barriers
By Ivanhoe Broadcast News on November 3, 2023
https://www.ivanhoe.com/?p=31664&preview=1&_ppp=397ea1d8f2
PREGNANT AND BATTLING A BRAIN TUMOR
Pregnant and Battling a Brain Tumor
By Ivanhoe Broadcast News on November 2, 2023
https://www.ivanhoe.com/?p=31662&preview=1&_ppp=62f3d82468
TODDLER’S TRIUMPH: TRANSFORMING LUCAS’ SKULL
Toddler’s Triumph over Birth Defect: Transforming Lucas’ Skull
By Ivanhoe Broadcast News on November 1, 2023
https://www.ivanhoe.com/?p=31659&preview=1&_ppp=ba8571b733
ARTHROFIT: THE NEW FOUNTAIN OF YOUTH?
ArthroFit: The New Fountain of Youth?
By Ivanhoe Broadcast News on October 31, 2023
https://www.ivanhoe.com/?p=31656&preview=1&_ppp=7bc232f32e
FLU, TAMIFLU & BEHAVIORAL CHANGES IN KIDS?
Flu, TamiFlu & Neuropsychiatric Events in Kids?
By Ivanhoe Broadcast News on October 30, 2023
https://www.ivanhoe.com/?p=31649&preview=1&_ppp=c4943b5a0d
viernes, 27 de octubre de 2023
jueves, 26 de octubre de 2023
Your patient with high Lp(a) may qualify for a clinical trial
https://www.amgentrials.com/study/?id=20180244
Study overview:
Amgen Inc. is sponsoring a global, phase 3, double-blind cardiovascular outcomes study titled the OCEAN(a)-Outcomes Trial (The OCEAN(a) (Olpasiran Trials of Cardiovascular Events And LipoproteiN(a) Reduction – Outcomes Trial) to compare the effect of treatment with with investigational drug olpasiran to placebo, on the risk for coronary heart disease death (CHD death), myocardial infarction, or urgent coronary revascularization in participants with atherosclerotic cardiovascular disease (ASCVD) and elevated lipoprotein(a).
Participants will be randomly assigned to receive olpasiran or placebo administered by subcutaneous injection once every 12 weeks at the study site. The study drug will not replace any existing treatments that the patient may be receiving. The average follow-up duration will be around 4 years. The study is currently recruiting participants.
Key study requirements:
Adult patients receiving stable, optimized lipid-lowering therapy must have a history of myocardial infarction and/or percutaneous coronary intervention and an Lp(a) value of ≥ 200 nmol/L at screening by central laboratory.
miércoles, 25 de octubre de 2023
Genetic Variation and Sickle Cell Disease Severity: A Systematic Review and Meta-Analysis
https://pubmed.ncbi.nlm.nih.gov/37851445/
From the abstract: " What genetic modifiers of sickle cell disease (SCD) are currently defined, and what are potential approaches to improve future studies? In this systematic review and meta-analysis of 571 studies examining 29?670 individuals with SCD, 17?757 associations involving 1552 genes and 25 SCD phenotype categories were discovered; of these, only 173 associations met the study design, reporting, and phenotype or genotype harmonization required for meta-analysis. Gene variants regulating fetal hemoglobin and a-thalassemia were frequently identified, but other associations remained unconfirmed."
App aids early screening for autism
App aids early screening for autism
https://www.nih.gov/news-events/nih-research-matters/app-aids-early-screening-autism
martes, 24 de octubre de 2023
SCARY TOXIC HALLOWEEN HAZARDS
Halloween Hazards: Scary Toxic
By Ivanhoe Broadcast News on October 29, 2023
https://www.ivanhoe.com/?p=31551&preview=1&_ppp=c3a540abbb
CREEPY CRAWLEYS: HOW TO GET RID OF PESKY UNWANTED PESTS
Creepy Crawleys: How to Get Rid of Pesky Unwanted Pests
By Ivanhoe Broadcast News on October 29, 2023
https://www.ivanhoe.com/?p=31548&preview=1&_ppp=d83ba757be
VITAMIN DEFICIENT? EAT YOUR WAY TO GOOD HEALTH
Vitamin Deficient? Eat Your Way to Good Health
By Ivanhoe Broadcast News on October 28, 2023
https://www.ivanhoe.com/?p=31545&preview=1&_ppp=78c717e863
FIRST JOB FUNDAMENTALS: NAVIGATING DO’S AND DON’TS
First Job Fundamentals: Navigating Do’s and Don’ts
By Ivanhoe Broadcast News on October 28, 2023
https://www.ivanhoe.com/?p=31542&preview=1&_ppp=9597534391
BLOOD CANCER: THE SILENT DISEASE
Blood Cancer: The Silent Disease
By Ivanhoe Broadcast News on October 27, 2023
https://www.ivanhoe.com/?p=31595&preview=1&_ppp=de9d5eba78
IRREGULAR SLEEP DEADLY FOR THE HEART
Irregular Sleep Deadly for the Heart
By Ivanhoe Broadcast News on October 26, 2023
https://www.ivanhoe.com/?p=31588&preview=1&_ppp=60ebf3463a
CARDIAC REHAB INCREASES BYPASS SURVIVAL
Cardiac Rehab Increases Bypass Survival
By Ivanhoe Broadcast News on October 25, 2023
https://www.ivanhoe.com/?p=31582&preview=1&_ppp=649f407a6e
REDEFINING ALLERGY TREATMENT: MEDICINE’S NEXT BIG THING?
Redefining Allergy Treatment
By Ivanhoe Broadcast News on October 24, 2023
https://www.ivanhoe.com/medical-breakthroughs/redefining-allergy-treatment/
SAVING HANNAH’S BRAIN: CORRECTING CHIARI MALFORMATION
Saving Hannah’s Brain: Correcting Chiari Malformation
By Ivanhoe Broadcast News on October 23, 2023
https://www.ivanhoe.com/medical-breakthroughs/saving-hannahs-brain-correcting-chiari-malformation/
lunes, 23 de octubre de 2023
Director’s Innovation Speaker Series: Social Connection: An Eye to the Past, Present, and Future Date/Time: October 26, 2023, 2:00–3:00 p.m. ET
https://us06web.zoom.us/webinar/register/WN_KbVQHZsoTS-kMomtWQKW0A#/registration
During this lecture, Julianne Holt-Lunstad, Ph.D., will discuss the health impacts of having or lacking social connection.
The COVID-19 pandemic raised awareness about loneliness but also revealed gaps in our understanding of the individual and public health impacts of social connection. Dr. Holt-Lunstad will highlight the scope of the issue, evidence of health implications, and challenges and opportunities for translating this evidence into practical solutions and policy.
https://www.nimh.nih.gov/about/connect-with-nimh
domingo, 22 de octubre de 2023
Antipsychotic dose reduction: unclear benefits but certain risks Stefan Leucht,Irene Bighelli,Spyridon Siafis,Johannes Schneider-Thoma,John M Davis Nov 2023 Volume 10Number 11p817-908, e28-e29
Antipsychotic dose reduction: unclear benefits but certain risks
Stefan Leucht,Irene Bighelli,Spyridon Siafis,Johannes Schneider-Thoma,John M Davis
Nov 2023
Volume 10Number 11p817-908, e28-e29
https://www.thelancet.com/journals/lanpsy/issue/current
COVID-19 Resource Centre
COVID-19 Resource Centre
https://www.thelancet.com/coronavirus?dgcid=hubspot_email_conferencealerts_idweek23&utm_campaign=conferencealerts&utm_medium=email&_hsmi=278073229&_hsenc=p2ANqtz-9lzn4279Ar08jcGijz810tkwUdhPdEHAaWDuS1hiLqK6LHnmxG75dz24kFNdFU5CaVQsZncpGz8SgZNiiBAv0h4HKSeQ&utm_content=278073229&utm_source=hs_email
Comparison of surveillance systems for monitoring COVID-19 in England: a retrospective observational study
https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(23)00219-0/fulltext
sábado, 21 de octubre de 2023
Strategic Vision Refresh: Refreshing the NHLBI Strategic Vision
https://www.nhlbi.nih.gov/about/strategic-vision-refresh
NHLBI is refreshing its Strategic Vision to address emerging scientific opportunities in accordance with new NIH strategic plan requirements. Help identify scientific priorities, make decisions, and allocate resources by sharing your input.
viernes, 20 de octubre de 2023
10th Annual Student Voice Competition
https://www.m4rd.org/
The Student Voice Prize is an international essay competition that raises the profile of rare diseases within the medical field, particularly among medical students, nurses and scientists. Beacon and Medics4RareDiseases host the competition and the winner will be published in The Orphanet Journal of Rare Diseases!
https://www.rarebeacon.org/student-voice-prizes/the-student-voice-prize-2023/#:~:text=What%20is%20The%20Student%20Voice,rare%20diseases%20in%20their%20training.
Launch of HTx Patient Toolkit
https://www.htx-h2020.eu/for-patients/
As part of our work within the HTx Project, EURORDIS has developed the HTx Patient Toolkit - a series of resources and educational videos developed for advocates on health technology assessments (HTAs) and research conducted through the HTx project. François Houÿez, our Information & Access to Therapies Director, is among the instructors featured in the video series.
https://www.htx-h2020.eu/
Together4RD
https://together4rd.eu/
Along with our Together4RD project partners, Matt Bolz-Johnson, our Mental Health Lead and Healthcare Advisor, and Ines Hernando, our ERN and Healthcare Director, are among the co-authors who recently published a position statement calling for greater collaboration between European Reference Networks and industry.
Podcast: Rare on Air
https://www.eurordis.org/rare-on-air/
Should more diseases be screened for at birth?
In our latest episode of Rare on Air, Julien Poulain talks to Iuliana Dumitriu, the mother of Victor, an eight-year-old boy living with Coffin-Lowry Syndrome in Romania. Iuliana, who is also the President of the Coffin-Lowry Syndrome Association shares with Julien her family’s story of the torturous, yet determined, seven-year journey toward receiving a diagnosis for Victor. Julien also explores the results of our recent Rare Barometer survey with our Social Research Director Jessie Dubief.
Gene Age Exhibition
https://geneage.asgent.org/o-projektu/
Gene Age Exhibition
This month in Prague, the Association of Gene Therapy launched its Gene Age exhibition, accessible both in-person and online. The exhibition is aiming to heighten awareness and education regarding the impact of genes and their mutations in the development of human diseases, with a special focus on rare diseases. EURORDIS is a partner of the exhibition.
https://asgent.org/
Take the EURORDIS Access Campaign Questionnaire
https://www.eurordis.org/access-campaign-questionnaire/
Treatment Access
Have you completed the EURORDIS Access Campaign Questionnaire? We are inviting anybody living with a rare disease to share the difficulties they may be facing in accessing medicines, medical devices, surgeries, or medical consultations. The responses will help us uncover the hurdles to treatment that exist, toward the aim of improving access to treatments across Europe. Complete the questionnaire by 30 October.
Social Policy Action Group (SPAG)
https://www.eurordis.org/social-policy-action-group/
The Social Policy Action Group (SPAG) will support EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights.
SCREEN4CARE
https://www.eurordis.org/projects/screen4care/
Newborn Screening
In Barcelona last week, Gulcin Gumus, our Senior Manager for Research & Policy, led a meeting of the Screen4Care Forum on Newborn Screening. With more than 40 rare disease experts and project partners in attendance, the meeting delved into various topics, including the challenges of newborn screening research versus implementing practices of screening at birth into national health systems.
Commission Communication on ‘A Comprehensive Approach to Mental Health’ Response from EURORDIS-Rare Diseases Europe On behalf of the 30 million people living with a rare disease in Europe
Mental Wellbeing
On 28 November at the European Parliament in Brussels, EURORDIS and Mental Health Europe, as well as MEPs Sara Cerdas and Tilly Metz, will be hosting an event on the European Commission's recent Comprehensive Approach to Mental Health. The event will address how and why the Commission's Approach must support the mental health of individuals, including those with rare diseases, who face distinct challenges to their psychological wellbeing.
https://download2.eurordis.org/publications/EURORDIS-Response-on-a-Comprehensive-Approach-to-Mental-Health.pdfv
European Conference on Rare Diseases & Orphan Products (ECRD) 2024 will take place on 15-16 May 2024.
https://www.rare-diseases.eu/
The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.
Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.
The next ECRD will take place as a fully hybrid conference on 15-16 May 2024, in Brussels and online!
Olivia Culpo is speaking up for others with endometriosis
https://magazine.medlineplus.gov/article/olivia-culpo-is-speaking-up-for-others-with-endometriosis?utm_medium=email&utm_source=govdelivery
When Olivia Culpo was on stage after winning both the Miss USA and Miss Universe pageants in 2012, she was in pain, but she didn’t know why. It wasn’t until years later that the model, actress, and fashion and beauty influencer found the cause of her pain and other symptoms. Endometriosis is an often painful disease where tissue that looks like the lining of the uterus grows in other places in
jueves, 19 de octubre de 2023
2022 High Throughput Imaging Characterization of Brain Cell Types and Co...
High Throughput Imaging Characterization of Brain Cell Types and Connectivity
https://www.nimh.nih.gov/news/events/announcements/high-throughput-imaging-characterization-of-brain-cell-types-and-connectivity
ENLACE Study Explores Colorectal Cancer in Hispanic and Latino People
https://www.cancer.gov/news-events/cancer-currents-blog/2023/colorectal-cancer-enlace-hispanic-latino?cid=eb_govdel
The ENLACE study is the first to use cutting-edge technologies to describe the molecular features of colorectal tumors in Hispanic and Latino people. The study’s goals are to improve treatments and increase Hispanic/Latino engagement in cancer research.
A Periodic Look at Elements BY RACHEL CROWLEY
https://biobeat.nigms.nih.gov/2023/10/a-periodic-look-at-elements/?utm_medium=email&utm_source=govdelivery
Biomedical Beat Blog – National Institute of General Medical Sciences
National Chemistry Week: Recent Interviews With NIGMS-Funded Chemists
BY RACHEL CROWLEY
https://biobeat.nigms.nih.gov/2022/10/national-chemistry-week-recent-interviews-with-nigms-funded-chemists/?utm_medium=email&utm_source=govdelivery
miércoles, 18 de octubre de 2023
Pregnancy Registries
https://www.fda.gov/science-research/womens-health-research/pregnancy-registries?utm_medium=email&utm_source=govdelivery
Pregnancy exposure registries are studies that collect health information on exposure to medical products such as drugs and vaccines during pregnancy.
FDA OWH newsletter – October 2023: Spread the word about the importance of mammograms
https://www.fda.gov/consumers/women
Bringing Clinical Research to Patients
NOVEMBER 8, 2023
https://www.fda.gov/consumers/public-meetings-workshops-and-webinars/bringing-clinical-research-patients-11082023?utm_medium=email&utm_source=govdelivery
Research in Context: Obesity and metabolic health
The complexities of metabolism and body weight
Losing weight and reversing obesity might seem straightforward: eat fewer calories than you burn. But that’s not as easy as it sounds. This special Research in Context feature explores the many factors that affect the body’s metabolism and weight, some of which are difficult to control.
https://www.nih.gov/news-events/nih-research-matters/research-context-obesity-metabolic-health
martes, 17 de octubre de 2023
lunes, 16 de octubre de 2023
Women, power, and cancer: a Lancet Commission Monday, November 13, 2023
https://event.on24.com/wcc/r/4254417/AB192BBF49789E49D22AF74ED0F8551F?partnerref=tlcom_lancetwebinarshub_lancetwomenpowercancer23
Women, power, and cancer: a Lancet Commission
Nov 13, 2023
14:00 GMT / 9:00 EST
Women, power, and cancer: a Lancet Commission was created to address urgent questions at the intersection of social inequality, cancer risk and outcomes, and the status of women in society. In this Lancet Webinar, authors of The Lancet Commission will summarise the key findings of the Commission, including cancer equity and gender transformative policies, cancer prevention in women, gender-responsive frameworks in the healthcare context, and the value of women in cancer economics.
Directing vaccines to dendritic cells
Directing vaccines to dendritic cells
Many cancer vaccines under investigation use mRNA to deliver key information to the immune system. But most of these trials do not effectively target dendritic cells, a key orchestrator of the immune response. Because dendritic cells display antigens on their surface, which activates other components of the immune system and sounds the alarm about a potential threat, they are an attractive target for cancer treatment strategies.
With the ultimate goal of developing an improved vaccine strategy, a research team at Johns Hopkins University has designed a targeted, biodegradable nanoparticle that specifically delivers mRNA to dendritic cells. When evaluated in multiple mouse tumor models, treatment with the nanoparticles provided robust antitumor activity when combined with a type of therapy called immune checkpoint blockade. Their results were recently reported in the journal PNAS.