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.
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.
Conversations on Cancer: Living with Metastatic Breast Cancer
OCTOBER 19, 2023
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.
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
For any inquiries regarding this program, please send an email to: OCE-Engagement@fda.hhs.gov
ISS National Lab Highlighted by White House 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.
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 (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.
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 Researchhttps://openacademy.eurordis.org/winter-school/
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
11 October 2023 - CONFERENCE
Rare diseases and the European reference networks: how to guarantee European solidarity for patients?
9:00-9:30 Opening session
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.
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 keyhttps://www.eurordis.org/eurordis-response-disability-card/
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.
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.
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.
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.
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 firstname.lastname@example.org.
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.
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 (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 email@example.com.
Genes to Mental Health Network Open Session Meeting
Date/Time: September 26, 2023, 8:30 a.m.–12:30 p.m. ET
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.
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 firstname.lastname@example.org.
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
Part of NIH’s STRIVE consortium, the therapeutic may prevent overactive immune systems from causing severe symptoms.
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).
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.
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.
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."
ver historia personal en: www.cerasale.com.ar [dado de baja por la Cancillería Argentina por temas políticos, propio de la censura que rige en nuestro medio]//
weblog.maimonides.edu/farmacia/archives/UM_Informe_Autoevaluacion_FyB.pdf - //
weblog.maimonides.edu/farmacia/archives/0216_Admin_FarmEcon.pdf - //
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