sábado, 30 de septiembre de 2023
Advances in breast cancer research shared with NIH and the world
https://factor.niehs.nih.gov/2023/10/feature/breast-cancer-sister-study-advances-20-years?utm_medium=email&utm_source=govdelivery
As Sister Study turns 20, NIEHS lead researcher highlights study’s major findings at prestigious NIH lecture.
Tainted Arthritis | Pain Products: Hidden drug ingredients identified in products marketed for pain and arthritis
https://www.fda.gov/drugs/medication-health-fraud/tainted-arthritis-pain-products?utm_medium=email&utm_source=govdelivery
Kuka Flex Forte contains hidden drug ingredient
https://www.fda.gov/drugs/medication-health-fraud/kuka-flex-forte-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery
Reumo Flex contains hidden drug ingredient
https://www.fda.gov/drugs/medication-health-fraud/reumo-flex-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery
Article Spotlights an Often-Neglected Part of the Body Director’s Page Helene M. Langevin, M.D.
https://www.nccih.nih.gov/about/offices/od/director/past-messages/article-spotlights-an-often-neglected-part-of-the-body?nav=govd
I was so pleased to speak recently with The New York Times reporter, Danielle Friedman, for her recent story on fascia, “The Tissue That Connects Our Muscles May Be a Key to Better Health.” The role of fascia in how our bodies function and the impact on our health is a topic that hasn’t gotten enough attention, but that is beginning to change, and it’s encouraging to have a thoughtful discussion on this subject.
As Ms. Friedman explained, fascia is “the tough, flexible tissue that surrounds and connects muscles, bones, and organs like cling wrap.” I’m proud of the National Center for Complementary and Integrative Health’s work to advance research on this significant yet understudied part of our bodies. Our efforts are aimed at answering questions on how the health of fascia relates to overall health and wellness, physical performance, and its relationship to chronic pain, which affects about one in five Americans.
viernes, 29 de septiembre de 2023
Fibroid Awareness Month | What Causes Uterine Fibroids?
College Women's Health
https://www.fda.gov/consumers/take-time-care-program/college-womens-health?utm_medium=email&utm_source=govdelivery
FDA Approves First Nonprescription Daily Oral Contraceptive
https://www.fda.gov/news-events/press-announcements/fda-approves-first-nonprescription-daily-oral-contraceptive?utm_medium=email&utm_source=govdelivery
Women and Anxiety
https://www.fda.gov/consumers/free-publications-women/women-and-anxiety?utm_medium=email&utm_source=govdelivery
Knowledge and News on Women: OWH Blog
https://www.fda.gov/consumers/women/knowledge-and-news-women-owh-blog?utm_medium=email&utm_source=govdelivery
Facebook Live: Childhood Irritability Date/Time: November 7, 2023, 1:00–1:30 p.m. ET
https://www.nimh.nih.gov/news/events/announcements/facebook-live-childhood-irritability
Date/Time: November 7, 2023, 1:00–1:30 p.m. ET
Location: NIMH's Facebook Page
Many children go through periods of moodiness, but children with irritability experience severe symptoms that can lead to significant problems at home and school. The National Institute of Mental Health (NIMH) is hosting a Facebook Live event on childhood irritability featuring NIMH expert Melissa Brotman, Ph.D., chief of the Neuroscience and Novel Therapeutics Unit in the Intramural Research Program.
During the event, Dr. Brotman will discuss symptoms of irritability, why it's important to study irritability, NIMH-supported research in this area, and new treatments for severe irritability in youth.
No registration is required for this free event. Watch the live event on NIMH’s Facebook page.
DBS FOR STROKE: HELPING SURVIVORS TO MOVE AGAIN
DBS for Stroke: Helping Survivors to Move Again
By Ivanhoe Broadcast News on September 29, 2023
https://www.ivanhoe.com/medical-breakthroughs/dbs-for-stroke-helping-survivors-to-move-again/
BREASTFEEDING BENEFITS FOR MOMS
Breastfeeding Benefits for Moms
By Ivanhoe Broadcast News on October 8, 2023
https://www.ivanhoe.com/?p=31445&preview=1&_ppp=5a7ec8cb51
HOME REMEDIES FOR DRY EYES
Home Remedies for Dry Eyes
By Ivanhoe Broadcast News on October 7, 2023
https://www.ivanhoe.com/?p=31442&preview=1&_ppp=5f0f4521cf
I’M A PSYCHIATRIST & THIS IS MY MENTAL HEALTH TOOLKIT FOR MYSELF
I’m A Psychiatrist & This Is My Mental Health Toolkit for Myself
By Ivanhoe Broadcast News on October 6, 2023
https://www.ivanhoe.com/?p=31439&preview=1&_ppp=603f463b38
SEPSIS: ONE NURSE MAKES A DIFFERENCE
Sepsis: One Nurse Makes a Difference
By Ivanhoe Broadcast News on October 5, 2023
https://www.ivanhoe.com/?p=31435&preview=1&_ppp=f80053dc8b
NEW CAUSE FOR ENDOMETRIOSIS?
Endometriosis: New Cause?
By Ivanhoe Broadcast News on October 4, 2023
https://www.ivanhoe.com/?p=31432&preview=1&_ppp=f0bc506dc6
ALZHEIMER’S RISK FACTORS!
Alzheimer’s Risk Factors!
By Ivanhoe Broadcast News on October 3, 2023
https://www.ivanhoe.com/?p=31429&preview=1&_ppp=58d29fd0de
LEARNING WITH MARLIE: WHEN PLAY BECOMES PROGRESS
Learning with Marlie: When Play Helps Complex Disabilities
By Ivanhoe Broadcast News on October 2, 2023
https://www.ivanhoe.com/?p=31426&preview=1&_ppp=236a5264a6
jueves, 28 de septiembre de 2023
Conversations on Cancer: Living with Metastatic Breast Cancer OCTOBER 19, 2023
Conversations on Cancer: Living with Metastatic Breast Cancer
OCTOBER 19, 2023
https://www.fda.gov/news-events/fda-meetings-conferences-and-workshops/conversations-cancer-living-metastatic-breast-cancer-10192023?utm_medium=email&utm_source=govdelivery
Background:
FDA Oncology Center of Excellence (OCE) in conjunction with the European Medicines Agency (EMA) presents a Conversations on Cancer public panel discussion October 19, 2023, addressing the experience of living with metastatic breast cancer.
Approximately 10-30% of breast cancer patients in the world are living with advanced stage or metastatic disease. With improvements in treatments and more options for therapies, many of these patients are living for years with their cancer. Cancer survivorship has become an issue of growing importance since the Institute of Medicine reported this to be an important public health issue in 2006, and it has continued to be highlighted through the more recent launch of the Cancer Moonshot in the US and the EU beating cancer plan in EU. Though many patients living with advanced breast cancer experience some of the same stressors and long-term impacts of therapies that affect all cancer survivors, they are not routinely included in cancer survivorship programs and research.
The panel will feature speakers with a range of perspectives on breast cancer and, for the first time, will be an international collaboration with our colleagues at the EMA with the hope of highlighting the day-to-day, year-to-year experience of patients living with metastatic breast cancer.
Some of the themes we plan to discuss include:
How people find care for advanced stage breast cancer? What are the barriers to finding new treatments?
What are some of the long-term effects of cancer therapies and how have they impacted patients’ choices for care?
Are there mental health issues that particularly need to be addressed for patients with advanced breast cancer such as stress, difficulty sleeping, job loss?
How can clinical researchers and regulators better address the key issues we have highlighted for patients living with metastatic breast cancer?
Given our new collaboration with the EMA, we also hope to learn from any common threads and/or distinctions amongst patients and providers in U.S. and Europe.
Webcast Information:
A free-of-charge webcast of this public panel discussion will be provided. Registration for the webcast is required at: https://www.surveymonkey.com/r/SGF5FCP
FDA plans to post archived webcast of this Conversations on Cancer program at: https://www.fda.gov/about-fda/project-community/conversations-cancer
Contact:
For any inquiries regarding this program, please send an email to: OCE-Engagement@fda.hhs.gov
Help Those at Risk for Suicide The Department of Defense and Department of Veterans Affairs provide free and confidential nonclinical support around the clock.
Suicide Prevention Resources That Can Help
https://health.mil/News/Articles/2023/09/25/Suicide-Prevention-Resources-That-Can-Help?utm_medium=govdelivery&utm_source=email
Endometriosis under a microscope
https://magazine.medlineplus.gov/article/endometriosis-under-a-microscope?utm_medium=email&utm_source=govdelivery
NIH-supported research can boost reproductive health, but it needs your help
ISS National Lab Highlighted by White House Cancer Moonshot Initiative
ISS National Lab Highlighted by White House Cancer Moonshot Initiative
https://www.issnationallab.org/iss-national-lab-cancer-moonshot-initiative/
You’ve heard of reaching for the Moon, but the White House’s Cancer Moonshot initiative aims to do more. The recently reignited initiative has set forth an ambitious goal: to reduce the cancer death rate by at least half by 2047—which would prevent more than 4 million deaths—and improve the lives of people diagnosed with cancer. Last week, the White House released a new fact sheet of actions to move the initiative forward, and the International Space Station (ISS) National Laboratory and NASA are highlighted as key players.
miércoles, 27 de septiembre de 2023
Aligning Rhythms, Defying Alzheimer's: Intermittent Fasting's Role in Combating Alzheimer's Disease Neurodegeneration
https://www.news-medical.net/news/20230901/Aligning-Rhythms-Defying-Alzheimers-Intermittent-Fastings-Role-in-Combating-Alzheimers-Disease-Neurodegeneration.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=alzheimer_s_disease_newsletter_21_september_2023
Alzheimer's Disease Epidemiology
https://www.news-medical.net/health/Alzheimers-Disease-Epidemiology.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=alzheimer_s_disease_newsletter_21_september_2023
Proteins for Neuroscience
https://es.acrobiosystems.com/A1536-Proteins-for-Neuroscience.html?utm_source=newsmedical&utm_medium=email&utm_campaign=1451Ao23&utm_content=TGJXEN5316&utm_term=Sep_Alzheimer
Community Voices: Forging the Path Forward for HIV Self-testing and Personalized Viral Load Monitoring
Join NIH OAR's November 1-2: Workshop on HIV Self-testing and Viral Load Monitoring
https://oar.nih.gov/nih-virtual-workshop-community-voices-2023
Annual Report to the Nation Part 2: New cancer diagnoses fell abruptly early in the COVID-19 pandemic
https://www.cancer.gov/news-events/press-releases/2023/annual-report-to-the-nation-part-2-pandemic-cancer-diagnoses?cid=eb_govdel
Annual Report to the Nation: Cancer deaths continue downward trend; modest improvements in survival for pancreatic cancer
https://www.cancer.gov/news-events/press-releases/2022/annual-report-to-the-nation-2022
martes, 26 de septiembre de 2023
Ending cancer is personal
https://gifts.mdanderson.org/Default.aspx?tsid=26620&noamt=true&chosen=100&source=e24003&utm_source=appeal&utm_medium=email&utm_campaign=FY24-09-SeptemberGratitude&utm_content=EM2&utm_keyword=body1&sm_guid=NjQ4NjA0fDE5NTY0MTg1fC0xfGNlcmFzYWxlMzE0QGdtYWlsLmNvbXw2MzA0NjUzfHwwfDB8MTc4NDIxMzg4fDk0MXwwfDB8fDY0MTg5N3ww0
I recently invited you to post the name of a loved one affected by cancer on the
MD Anderson Cancer Center honor wall.
I hope you will take this opportunity to honor someone you miss, pay tribute to someone affected by cancer today or share your wishes for a cancer-free future for generations to come.
No one should face cancer alone. The honor wall represents our shared mission to end this devastating disease for everyone we know and love. Your post is sure to remind others that we are all in this together.
Open Phase I and II Clinical Trials
https://childrensnational.org/departments/center-for-cancer-and-blood-disorders/programs-and-services/oncology/clinical-trials
The Children's National Center for Cancer and Blood Disorders offers access to novel trials and therapies, some of which are only available at Children's National. With research interests covering nearly every aspect of pediatric cancer care, our work is making great advancements in childhood cancer.
Researchers publish first-ever atlas of cancerous mutations in histones
VIDEO: Researchers publish first-ever atlas of cancerous mutations in histones
Leading genetic researchers at Children’s National Hospital have published the first pan-cancer atlas of key mutations that can drive molecular changes leading to tumors, creating a roadmap that could lead to new treatments for brain tumors and other cancers.
https://innovationdistrict.childrensnational.org/researchers-publish-first-ever-atlas-of-cancerous-mutations-in-histones/
lunes, 25 de septiembre de 2023
20-I-0160—Dose-Escalation Study of a Low Pathogenicity Avian H10N7 Influenza Virus in a Healthy Human Challenge Model
https://www.niaid.nih.gov/clinical-trials/20-i-0160-dose-escalation-study-low-pathogenicity-avian-h10n7-influenza-virus?utm_medium=social&utm_source=govdelivery&utm_campaign=clinicaltrail_influenzavirus_9252023
NIAID is enrolling healthy, nonsmoking adults 18-50 years of age for an inpatient flu study. The study is being conducted by NIAID and will take place at the National Institutes of Health Clinical Center in Bethesda, MD. There is no cost to participate and compensation may be provided.
Hearing aids slow cognitive decline in people at high risk
https://www.nia.nih.gov/news/hearing-aids-slow-cognitive-decline-people-high-risk?utm_source=nia-eblast&utm_medium=email&utm_campaign=news-20230925
NIH-funded research team found that hearing aids reduced the rate of cognitive decline in older adults at high risk of dementia by almost 50% over a three-year period.
Webinar – Innovating for Inclusion: Making Clinical Research More Diverse October 31, 2023
https://www.nia.nih.gov/news/webinar-innovating-inclusion-making-clinical-research-more-diverse?utm_source=nia-eblast&utm_medium=email&utm_campaign=rd2023-20230925
Register for the NIA webinar on Oct. 31 from 2 to 2:45 p.m. ET. Speakers will offer their insights and resources to help support the inclusion of more diverse participants in dementia research.
domingo, 24 de septiembre de 2023
Muscular Dystrophy Awareness Month: Read CDC Information
https://www.cdc.gov/ncbddd/musculardystrophy/index.html
Muscular dystrophies are a group of genetic disorders that result in muscle weakness over time. Each type of muscular dystrophy is different from the others. It is important to get help as early as possible. Muscular dystrophy has no cure, but acting early may help an individual with muscular dystrophy get the services and treatments he or she needs to lead a full life.
Sickle Cell Disease Awareness Month: Read CDC Information
https://www.cdc.gov/ncbddd/sicklecell/index.html
Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” People with SCD can live full lives and enjoy most of the activities that other people do. If you have SCD, it’s important to learn how to stay as healthy as possible.
Heart Disease, Family Health History, and Familial Hypercholesterolemia
https://www.cdc.gov/genomics/disease/fh/index.htm
Familial Hypercholesterolemia
https://www.cdc.gov/genomics/disease/fh/FH.htm
Familial hypercholesterolemia (FH) is a genetic disorder that affects about 1 in 250 people and increases the likelihood of having coronary heart disease at a younger age.
sábado, 23 de septiembre de 2023
EURORDIS Open Academy School on Medicines Research & Development
https://openacademy.eurordis.org/summer-school/
2024 Open Academy
Our two Open Academy Schools, taking place on 3-7 June 2024 in Barcelona, will offer rare disease-specific training to patient advocates from across Europe on the topics of 'Medicines Research & Development' and 'Scientific Innovation & Translational Research'. Make sure to submit your application by 27 October!
EURORDIS Open Academy School on Scientific Innovation & Translational Research
https://openacademy.eurordis.org/winter-school/
Newborn screening
https://www.eurordis.org/our-priorities/diagnosis/newborn-screening/
Newborn screening
94% of people who live with a rare disease and those close them support the diagnosis of a medical condition at a child's birth. Newborn screening is important to many people living with a rare disease and their families. This month, EURORDIS has focused on campaigning for the harmonisation of criteria and adequate policies for newborn screening across Europe. Support our efforts by joining the conversation using the hashtag #Screening4Rare on social media.
DRAFT PROGRAMME - Conference on Rare diseases and the European reference networks
DRAFT PROGRAMME - Conference on Rare diseases and the European reference networks
11 October 2023 - CONFERENCE
Rare diseases and the European reference networks: how to guarantee European solidarity for patients?
9:00-9:30 Opening session
https://www.eesc.europa.eu/en/agenda/our-events/events/conference-rare-diseases-and-european-reference-networks/programme
Spanish EU Presidency
On 10-11 October in Bilbao, the Spanish Presidency of the EU Council and the European Economic and Social Committee (EESC) will be hosting the 'Conference on Rare diseases and the European Reference Networks'. Among the speakers of the conference will be the Spanish Minister for Health, José Miñones Conde, and our Chief Executive Officer, Yann Le Cam. Read the programme.
Union of equality: Commission proposes European Disability and Parking Card valid in all Member States
https://ec.europa.eu/commission/presscorner/detail/en/ip_23_4331
EU Disability Card
This month, the European Commission launched its legislative proposal for expanding the European Disability Card across the EU, to ensure access to a range of services under preferential conditions for EU citizens with disabilities. EURORDIS welcomed the proposal as an "important step in the right direction", but not without also noting that the proposal "should have been more ambitious".
EURORDIS: Commission’s Disability Card plans are promising, but implementation will be key
https://www.eurordis.org/eurordis-response-disability-card/
Every patient has a unique story
https://www.braverare.com/
Our friends at the Healthcare Education Institute recently launched the Brave RARE Ukraine project, which is sharing the stories of displaced Ukrainians living with complicated, chronic, and often life-threatening diseases. The project, of which EURORDIS is a partner, is aiming to raise awareness of the challenges they are facing, and how they can be overcome.
https://eduinstitute.org/
Take the EURORDIS Access Campaign Questionnaire
https://www.eurordis.org/access-campaign-questionnaire/
Treatment Access
The EURORDIS Access Campaign Questionnaire is 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.
Conference on Rare diseases and the European reference networks
https://www.eesc.europa.eu/en/agenda/our-events/events/conference-rare-diseases-and-european-reference-networks
11 October: Conference – "How to guarantee European solidarity for patients?" | Euskalduna Conference CentreBilbaoSpain
Pharma Firms Can Sue Competitors For Violating Orphan Exclusivity, German Court Rules
https://archive.ph/4iDGi#selection-1289.0-1289.85
Simone Boselli, our Public Affairs Director, has spoken to Pink Sheet, a news outlet covering pharmaceutical affairs, about a recent German court ruling relating to pharmaceutical companies suing their competitors for violating market exclusivity in the orphan drug market. Simone told Pink Sheet that while the enforcement of EU regulations in this area is welcome, "sidelining questions around affordability would be an error".
Joint HTA And Pricing: How To Make Specialized Treatments like Strimvelis Affordable
https://pink.citeline.com/PS122335/Joint-HTA-And-Pricing-How-To-Make-Specialized-Treatments-like-Strimvelis-Affordable
The IRDiRC Chrysalis Task Force: making rare disease research attractive to companies
https://journals.sagepub.com/doi/10.1177/26330040231188979
The Chrysalis Task Force launched by the International Rare Diseases Research Consortium (IRDiRC) - of which EURORDIS is a member - has produced an article identifying the key financial and non-financial factors that make rare disease research and development more attractive to companies. The Task Force is comprised of thought leaders from companies, patient advocacy groups, regulatory agencies, and research funders.
https://irdirc.org/
Avicenna Days (AAD) 2023
https://www.avicenna-alliance.com/avicenna-days/avicenna-days-aad-2023.html
The Avicenna Alliance, an association of industry, academic and healthcare organisations who have an interest in the development of in silico medicine, will be hosting the Avicenna Days 2023 conference from 10-12 October. Day 3 of the conference, titled 'Involving and serving the patients', will feature a diverse range of speakers on catalysing medical innovation through patient engagement, including Veronica Popa, our Digital Patient Engagement Manager at EURORDIS. The event is online and free to attend.
Living Life to the Full – Life with Kearns Sayre syndrome
https://www.eurordis.org/life-with-kearns-sayre/
This week, we published an article telling Victor Valkov's story. Viktor is 22, living in Bulgaria with Kearns Sayre syndrome, yet does not let this impact his outlook on life. Viktor diligently follows his mito cocktail regimen, primarily consisting of supplements and vitamins, while doing physiotherapy five times a week and swimming each weekend. He knows that his efforts have long-term benefits and tries hard to complete his daily tasks as best as he can. Read more stories from our community.
Would you like to share your story with us about life with a rare disease to support our Community article series? Contact Rhiannon Walls, our Communications Junior Manager, at rhiannon.walls@eurordis.org.
Measuring how living with a rare disease impacts our mental health
https://www.mhe-sme.org/measuring-how-living-with-a-rare-disease-impacts-our-mental-health/
Mental health and living with NF1
Claas Röhl, the father of a daughter with Neurofibromatosis Type 1 (NF1), has written for Mental Health Europe about the specific mental health strains of a rare disease on individuals and their families. NF1 is a genetic disorder that causes tumours to grow along nerves, and Claas is the President of NF Kinder, an organisation committed to improving the lives of people with the condition. NF Kinder have also recently launched their campaign, 'The Many Faces of the NF', which is raising awareness of NF1 and features people living with the condition, their relatives, and their doctors.
September is….Leukodystrophy Awareness Month
https://alextlc.org/september-is-leukodystrophy-awareness-month/
Leukodystrophy Awareness Month takes place every year throughout September, and aims to spread awareness of everyone affected by leukodystrophy. Leukodystrophy refers to the group of rare genetic disorders characterised by the progressive degeneration of white matter in the brain, leading to neurological and motor dysfunction. Leukodystrophy Awareness Month provides an opportunity to raise awareness of leukodystrophy, including the symptoms of leukodystrophy, the impact of the condition on individuals and families.
International Ataxia Awareness Day – September 25, 2023
https://nationaltoday.com/international-ataxia-awareness-day/
International Ataxia Awareness Day (IAAD) is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease. A great way to spread awareness is to encourage people to learn about Ataxia. Share what you know about Ataxia and your experiences.
Is your organisation also aware of any upcoming awareness events that you would like to see promoted in the Community section of our monthly newsletter? If yes, contact our Communications Manager, Julien Poulain, at julien.poulain@eurordis.org.
Genes to Mental Health Network Open Session Meeting Date/Time: September 26, 2023, 8:30 a.m.–12:30 p.m. ET
Genes to Mental Health Network Open Session Meeting
Date/Time: September 26, 2023, 8:30 a.m.–12:30 p.m. ET
https://www.eventbrite.com/e/genes-to-mental-health-network-open-session-meeting-tickets-715346640057?aff=oddtdtcreator
The Genes to Mental Health (G2MH) Network initiative was established in 2019 under RFA-MH-19-200 and RFA-MH-19-201 . The program aims to investigate the behavioral and cognitive symptoms in individuals with rare genetic variants that confer a high risk for neurodevelopmental psychiatric disorders for characterizing genotype-to-phenotype relationships.
During the annual meeting, this open session will feature research progress presentations from the G2MH Network investigators.
Technical Assistance Webinar: Approaches to Identifying Preteen Suicide Risk and Protective Factors
https://www.nimh.nih.gov/news/events/announcements/technical-assistance-webinar-approaches-to-identifying-preteen-suicide-risk-and-protective-factors
A technical assistance webinar will be held for prospective applicants of the following Notice of Funding Opportunities (NOFOs): Approaches to Identifying Preteen Suicide Risk and Protective Factors (R01 Clinical Trial Not Allowed) and Data Coordinating Center for Approaches to Identifying Preteen Suicide Risk and Protective Factors (U24 Clinical Trial Not Allowed).
National Institute of Mental Health staff will be available to answer questions related to these NOFOs. Participation in the webinar is optional and is not required to apply to these applications.
No registration required! All prospective applicants are invited to attend and are highly encouraged to submit questions in advance. Please send questions to eric.murphy@nih.gov.
County-Level Sociodemographic Characteristics and Availability of COVID-19 Therapeutic Drugs
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2809728?utm_medium=email&utm_source=govdelivery
An NIMHD-funded study investigating the availability of COVID-19 therapeutics across the U.S. found that there were disparities in access to these drugs. Counties with high rates of people living below the federal poverty line, individuals without health insurance, and populations with a high social vulnerability index had lower access to treatment. This was also the case for counties with high numbers of Black individuals. The findings were published in JAMA on Wednesday, September 20.
The study was co-authored by NIH’s Stadtman Invesigator, Dr. Kosuke Tamura, who heads the Socio-Spatial Determinants of Health (SSDH) Laboratory in the Division of Intramural Research at NIMHD.
Clinical trial to test immune modulation strategy for hospitalized covid-19 patients begins
Clinical trial to test immune modulation strategy for hospitalized covid-19 patients begins
Part of NIH’s STRIVE consortium, the therapeutic may prevent overactive immune systems from causing severe symptoms.
https://www.nih.gov/news-events/news-releases/clinical-trial-test-immune-modulation-strategy-hospitalized-covid-19-patients-begins
A clinical trial has launched to test whether early intensive immune modulation for hospitalized COVID-19 patients with relatively mild illness is beneficial. The placebo-controlled study, part of the global clinical trials consortium known as Strategies and Treatments for Respiratory Infections and Viral Emergencies (STRIVE), will enroll approximately 1,500 people at research sites around the world. It is supported by the National Institutes of Health’s National Institute of Allergy and Infectious Diseases (NIAID) in partnership with NIH’s National Center for Advancing Translational Sciences (NCATS).A clinical trial has launched to test whether early intensive immune modulation for hospitalized COVID-19 patients with relatively mild illness is beneficial. The placebo-controlled study, part of the global clinical trials consortium known as Strategies and Treatments for Respiratory Infections and Viral Emergencies (STRIVE), will enroll approximately 1,500 people at research sites around the world. It is supported by the National Institutes of Health’s National Institute of Allergy and Infectious Diseases (NIAID) in partnership with NIH’s National Center for Advancing Translational Sciences (NCATS).
viernes, 22 de septiembre de 2023
FIBROMYALGIA OR CHRONIC FATIGUE?
Fibromyalgia or Chronic Fatigue?
By Ivanhoe Broadcast News on September 8, 2023
https://www.ivanhoe.com/family-health/fibromyalgia-or-chronic-fatigue/
YOU’VE GOT A DEGREE. NOW WHAT? HELPING YOU GET YOUR FIRST JOB
You’ve Got a Degree. Now What? Helping You Get Your First Job
By Ivanhoe Broadcast News on September 24, 2023
https://www.ivanhoe.com/?p=31299&preview=1&_ppp=fd351b53a3
BEYOND THE BITE: TICK-BORN MEAT ALLERGIES
Beyond the Bite: Tick-Borne Meat Allergies
By Ivanhoe Broadcast News on September 24, 2023
https://www.ivanhoe.com/?p=31296&preview=1&_ppp=a4202048c1
EMPOWERING A NEW GENERATION: HOW TO LEAD GEN Z
Empowering A New Generation: How to Lead Gen Z
By Ivanhoe Broadcast News on September 23, 2023
https://www.ivanhoe.com/?p=31293&preview=1&_ppp=0a6bdaca5b
BREATHE DEEP: MONITORING AIR QUALITY
Breathe Deep: Monitoring Air Quality
By Ivanhoe Broadcast News on September 23, 2023
https://www.ivanhoe.com/?p=31290&preview=1&_ppp=6d9413eea0
VAPING & CANCER LINK: THE NEW DANGER
Vaping & Cancer Link: The New Danger
By Ivanhoe Broadcast News on September 19, 2023
https://www.ivanhoe.com/medical-breakthroughs/vaping-cancer-link-the-new-danger/
FIRST FDA APPROVED DRUG TO SLOW ALZHEIMER’S
First FDA Approved Drug to Slow Alzheimer’s
By Ivanhoe Broadcast News on September 20, 2023
https://www.ivanhoe.com/medical-breakthroughs/alzheimers-first-fda-approved-drug-to-slow/
CANCER DRUG SHORTAGE
Cancer Drug Shortage
By Ivanhoe Broadcast News on September 21, 2023
https://www.ivanhoe.com/medical-breakthroughs/cancer-drug-shortage/
IS SMOKING IN YOUR GENES?
Is Smoking in Your Genes?
By Ivanhoe Broadcast News on September 22, 2023
https://www.ivanhoe.com/medical-breakthroughs/is-smoking-in-your-genes/
DANGEROUS TEEN TREND: GETTING HIGH FROM CHROMING?
Chroming: Dangerous Teen Trend
By Ivanhoe Broadcast News on October 1, 2023
https://www.ivanhoe.com/?p=31358&preview=1&_ppp=1d409e9cd0
MONEY MATTERS: CREATING CASH SAVVY KIDS
Money Matters: Creating Cash Savvy Kids
By Ivanhoe Broadcast News on September 30, 2023
https://www.ivanhoe.com/?p=31355&preview=1&_ppp=e06e68c85d
TRANSITION FROM STAY-AT-HOME MOM TO FULL-TIME-JOB MOM
Transition from Stay-At-Home Mom to Full-Time-Job Mom
By Ivanhoe Broadcast News on September 30, 2023
https://www.ivanhoe.com/?p=31352&preview=1&_ppp=80760b1667
DBS FOR STROKE: HELPING SURVIVORS TO MOVE AGAIN
DBS for Stroke: Helping Survivors to Move Again
By Ivanhoe Broadcast News on September 29, 2023
https://www.ivanhoe.com/?p=31406&preview=1&_ppp=099ffac78b
NEW TECHNOLOGY SAVING LIVERS AND LIVES
New Technology Saving Livers and Lives
By Ivanhoe Broadcast News on September 28, 2023
https://www.ivanhoe.com/?p=31399&preview=1&_ppp=110542fcf8
BEAR IMPLANT PRESERVESTHE ACL
BEAR Implant Preserves the ACL
By Ivanhoe Broadcast News on September 27, 2023
https://www.ivanhoe.com/?p=31389&preview=1&_ppp=0ceabcf8dd
USING AI TO PREVENT HEARING LOSS
Prevent Hearing Loss: Using AI
By Ivanhoe Broadcast News on September 26, 2023
https://www.ivanhoe.com/?p=31381&preview=1&_ppp=08825f4795
COLORECTAL CANCER ON THE RISE IN YOUNG
Colorectal Cancer on the Rise in Young
By Ivanhoe Broadcast News on September 25, 2023
https://www.ivanhoe.com/?p=31375&preview=1&_ppp=6cb78db115
jueves, 21 de septiembre de 2023
KETAMINE TO HEAL KIDS’ BRAINS?
Ketamine to Heal Kids’ Brains?
By Ivanhoe Broadcast News on September 18, 2023
https://www.ivanhoe.com/family-health/children/ketamine-to-heal-kids-brains/
SAMHSA Releases Key Survey Findings on Recovery from Substance Use and Mental Health Problems Among Adults in the United States Today
https://store.samhsa.gov/product/recovery-from-substance-use-mental-health-problems-among-adults-in-us/pep23-10-00-001?utm_source=SAMHSA&utm_campaign=1c4d61efbf-EMAIL_CAMPAIGN_2023_09_15_04_00&utm_medium=email&utm_term=0_-1c4d61efbf-%5BLIST_EMAIL_ID%5D
As part of SAMHSA’s 2023 National Recovery Month efforts, SAMHSA’s Office of Recovery has released the Recovery from Substance Use and Mental Health Problems Among Adults in the United States Report.
Based on data from the National Survey on Drug Use and Health (NSDUH), an annual survey sponsored by SAMHSA, key findings from the report include:
Recovery is real and possible – A significant majority (7 in 10) of adults who have had a mental health or substance use condition are in recovery and they represent over 50 million Americans.
Recovery is holistic and personalized – Factors such as social supports, treatment, insurance coverage, and spirituality can be key in supporting recovery.
Resilience can accompany recovery – People in recovery reported that their mental health and substance use were not significantly impacted by the COVID-19 pandemic.
Conducted annually, the NSDUH provides nationally representative data on the use of tobacco, alcohol, and drugs; substance use disorders; receipt of substance use treatment; mental health issues; and the use of mental health services among the civilian, noninstitutionalized population aged 12 or older in the United States.
In Other Words: Sandboxes Aren’t Just for Kids BY RACHEL CROWLEY
https://biobeat.nigms.nih.gov/2023/09/in-other-words-sandboxes-arent-just-for-kids/?utm_medium=email&utm_source=govdelivery
Cloudy With a Chance of Scientific Discoveries
BY RACHEL CROWLEY
https://biobeat.nigms.nih.gov/2022/03/cloudy-with-a-chance-of-scientific-discoveries/?utm_medium=email&utm_source=govdelivery
miércoles, 20 de septiembre de 2023
The global launch of Women, power and cancer: A Lancet Commission on Women miércoles, 27 de septiembre de 2023 9:00 - 11:30 (UTC-03:00) Ciudad de Buenos Aires
https://iheid.webex.com/webappng/sites/iheid/meeting/register/00eddfcb4e684ad9b5c5a37273c57944?ticket=4832534b00000006e5fceeeb0f51bd0707ad838286b4f27f1067c7d3abf9be7a161c7cf3d342e042×tamp=1695215189458&RGID=r76ba5e10ef0689915b0e83d01e77a662
We are pleased to invite you to the virtual launch of Women, power and cancer: A Lancet Commission, on Sep 27, 2023, at 13:00 BST/11:00 EDT. Attendance is free, and you can register to attend the session here.
Women, power, and cancer: A Lancet Commission applies an intersectional feminist approach to investigate, expose, and challenge the current imbalance of power in relation to cancer. The report calls for sex and gender to be included in all cancer-related policies and guidelines, making them responsive to the needs and aspirations of all women, whether they be cancer patients, care providers, researchers, or advocates.
With opening remarks from Vania Wisdom, Executive Editor of The Lancet and Oncology Ambassador, and a panel discussion moderated by Richard Horton, Editor-in-Chief of The Lancet, join us as the authors discuss key findings and recommendations from the Commission.
martes, 19 de septiembre de 2023
Volunteers needed for studies to advance dementia research
Volunteers needed for studies to advance dementia research
https://www.alzheimers.gov/clinical-trials?utm_source=nia-eblast&utm_medium=email&utm_campaign=clinicaltrials-20230918
Brain Stimulation Using Light and Music for Early-Stage Alzheimer's Disease
https://www.alzheimers.gov/clinical-trials/brain-stimulation-using-light-and-music-early-stage-alzheimers-disease?utm_source=nia-eblast&utm_medium=email&utm_campaign=clinicaltrials-20230918
Alzheimer's Prevention Registry
https://www.alzheimers.gov/clinical-trials/alzheimers-prevention-registry?utm_source=nia-eblast&utm_medium=email&utm_campaign=clinicaltrials-20230918
Brain Health Registry
https://www.alzheimers.gov/clinical-trials/brain-health-registry?utm_source=nia-eblast&utm_medium=email&utm_campaign=clinicaltrials-20230918
CADASIL Registry
https://www.alzheimers.gov/clinical-trials/cadasil-registry?utm_source=nia-eblast&utm_medium=email&utm_campaign=clinicaltrials-20230918
NIH Releases Strategic Plan for Research on Herpes Simplex Virus 1 and 2
https://www.niaid.nih.gov/news-events/nih-releases-strategic-plan-research-herpes-simplex-virus-1-and-2?utm_campaign=+57753854&utm_content=&utm_medium=email&utm_source=govdelivery&utm_term=
In response to the persistent health challenges of herpes simplex virus 1 (HSV-1) and HSV-2, today the National Institutes of Health released the Strategic Plan for Herpes Simplex Virus Research. An NIH-wide HSV Working Group developed the plan, informed by feedback from more than 100 representatives of the research and advocacy communities and interested public stakeholders. HSV-1 and HSV-2 are among the most common viral infections in the United States. There are no licensed preventive HSV vaccines, and there is no cure. The plan will advance understanding of HSV virology and accelerate development of diagnostics, vaccines, and therapies.
lunes, 18 de septiembre de 2023
The unfinished agenda of communicable diseases among children and adolescents before the COVID-19 pandemic, 1990–2019: a systematic analysis of the Global Burden of Disease Study 2019The unfinished agenda of communicable diseases among children and adolescents before the COVID-19 pandemic, 1990–2019: a systematic analysis of the Global Burden of Disease Study 2019
Estimating the exposure–response function between long-term ozone exposure and under-5 mortality in 55 low-income and middle-income countries: a retrospective, multicentre, epidemiological study
Estimating the exposure–response function between long-term ozone exposure and under-5 mortality in 55 low-income and middle-income countries: a retrospective, multicentre, epidemiological study
https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(23)00165-1/fulltext?dgcid=hubspot_update_feature_updatealerts_lanplh&utm_campaign=update-lanplh&utm_medium=email&_hsmi=274609108&_hsenc=p2ANqtz-9GARVrFPWEPRTlNVOWGb2l7As4wUVVDoIZ0LVr6VHDW2d5s8wkb53Hb3LLGx4t8TYqM5Lb9Fp_17_FG2XQTFQcikBpLw&utm_content=274412428&utm_source=hs_email
IACC Full Committee Meeting (Hybrid) Wednesday, October 11, 2023; 10:00 a.m. - 5:00 p.m. ET 6001 Executive Boulevard, Rockville, MD 20852
https://iacc.hhs.gov/meetings/iacc-meetings/2023/full-committee-meeting/october11/register.shtml
The Interagency Autism Coordinating Committee (IACC) will be holding a hybrid Full Committee Meeting on Wednesday, October 11, 2023 from 10:00 a.m. to 5:00 p.m. ET in Rockville, MD. The Committee welcomes public comments, including those related to mental health and employment, which are the featured topics at the meeting. Comments are due Wednesday, September 20, 2023 at 5:00 p.m. The hybrid meeting is free and will be open to the public in-person and via NIH Videocast. For more information visit the meeting page.
domingo, 17 de septiembre de 2023
Rare variants in CAPN2 increase risk for isolated hypoplastic left heart syndrome Blue EE , White JJ , Dush MK , Gordon WW , Wyatt BH , White P , Marvin CT , Helle E , Ojala T , Priest JR , Jenkins MM , Almli LM , Reefhuis J , Pangilinan F , Brody LC , McBride KL , Garg V , Shaw GM , Romitti PA , Nembhard WN , Browne ML , Werler MM , Kay DM , Mital S , Chong JX , Nascone-Yoder NM , Bamshad MJ .
Impact of different classes of immune-modulating treatments on B cell-related and T cell-related immune response before and after COVID-19 booster vaccination in patients with immune-mediated diseases and primary immunodeficiency: a cohort study. External Web Site Icon Koehm Michaela, et al. RMD open 2023 0 0. (3)
Pregnant and Living with Sickle Cell Disease: A Push for Better Outcomes NIH, September 2023
https://phgkb.cdc.gov/PHGKB/specificPHGKB.action?topic=Infectious%20diseases&query=home
From the website: " Experts say that medical advances in care and disease-modifying therapies have helped many people living with SCD survive well through their reproductive years. For parents-to-be, that means awareness is key. Individuals with SCD are at higher risk than the general population for preeclampsia, as Found discovered; but those with preeclampsia can go on to develop a condition called eclampsia, which can lead to seizures and even coma. People with SCD are also at higher risk for sepsis and blood clots. And there are risks for the fetus, such as lower-than-normal growth in the womb, preterm delivery, and stillbirth."
From Guthrie to Genomes: The Continued Evolution of Newborn Screening
https://blogs.cdc.gov/genomics/2022/08/15/from-guthrie-2/
August 15, 2022 by Amy Gaviglio, MS, CGC, 4ES Corporation, Cynthia Hinton, PhD, Suzanne Cordovado, PhD, Rosemary Hage, PhD, and Carla Cuthbert, PhD, Newborn Screening and Molecular Biology Branch, Centers for Disease Control and Prevention
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