NIMH's 75th Anniversary Symposium–In-Person Registration Closing Soon
In September, the National Institute of Mental Health (NIMH) is launching its yearlong 75th anniversary celebration with "The Evolution of Mental Health Research" symposium, highlighting key advances in mental health research.
Event date: September 13, 2023
Time: 8:30 a.m.–5:30 p.m. ET
Location: Natcher Conference Center on the NIH campus in Bethesda, MD.
This symposium is free, and registration is required. In-person registration will close on September 5.
AMD Days 2023
From the website: "CDC OAMD and APHL have co-sponsored AMD day, AMD 2-day, Virtual AMD-days, and now AMD days since 2016. This symposium began as an opportunity for OAMD funded CDC projects to be shared and presented. It has evolved to be an opportunity for state and local public health laboratories, CDC laboratories to present their work, network, and hear from leaders in the field. We are excited to bring back AMD-days! This event will be held September 12-14, 2023 at the CDC Roybal Campus in Atlanta, GA."
The U.S. Preventive Services Task Force seeks comments on a draft recommendation statement and draft evidence review on primary care interventions to prevent child maltreatment. The Task Force is calling for more research on how to prevent child maltreatment before it occurs in children and adolescents who do not show signs or symptoms of abuse and neglect. The draft recommendation statement and draft evidence review are available for review and public comment from August 29, 2023 to September 25, 2023 here.
This review will summarize the evidence regarding diagnosis, prophylactic treatment, symptomatic treatment, and repeat surgery of tethered spinal cord. With funding from PCORI, AHRQ commissioned this work to synthesize the findings on the diagnosis and treatment of tethered spinal cord. The systematic review will support the Congress for Neurological Surgeons clinical practice guidelines.
Treatment of Stage I-III Squamous Cell Anal Cancer: This is an new protocol for a systematic review that will summarize the state of the evidence on treatment of stage I-III squamous cell carcinoma of the anal canal and anal margin.
This systematic review will assess the effectiveness and harms of treatment for stages I-III squamous cell anal cancer. This review, funded by the Patient-Centered Outcomes Research Institute, will be used by the American Society of Clinical Oncology and the American Society of Radiation Oncology to update clinical practice guidelines.
Diagnosis and Management of Obsessive Compulsive Disorders in Children: The systematic review will summarize the findings from 1. Studies related to the accuracy of assessment tools compared to reference standard methods to identify OCD in symptomatic youth and 2. Studies of psychological and/or pharmacological treatments of OCD.
This comparative effectiveness review will inform a planned update of the 2012 American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter. AACAP nominated this topic to the Patient-Centered Outcomes Research Institute, which contracted with the Agency for Healthcare Research and Quality to conduct the review. Specifically, the systematic review will summarize the findings from 1. Studies related to the accuracy of assessment tools compared to reference standard methods to identify OCD in symptomatic youth and 2. Studies of psychological and/or pharmacological treatments of OCD. The intended audience includes guideline developers, child psychiatrists and psychologists, pediatricians, family physicians, advanced practice providers, parents, and patients.
The journeys of Robin and Angelina, two young individuals living with Lafora Disease, may be separated by thousands of miles, but they intertwine through shared experiences. Lafora disease, a terminal neurodegenerative condition affecting children, currently lacks a cure. EURORDIS sheds a light on Robin's and Angelina's stories and the brilliant work of the Chelsea’s Hope Lafora Children Research Fund.
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 email@example.com.
Yesterday, on 22 August, our member organisation SATB2 Europe marked SATB2-Associated Syndrome Awareness Day. SATB2-Associated Syndrome (SAS), also known as Glass Syndrome or 2q33.1 Microdeletion Syndrome, is a rare genetic neurodevelopmental disorder caused by alterations of the SATB2 gene on the second chromosome. This syndrome significantly affects many organ systems and thus areas of development, primarily brain, palate, teeth and bones. To learn more about the experiences of those impacted by SAS, listen this discussion with Erika Stariha, the Founding President of SATB2 Europe and the mother of a boy with the condition.
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 firstname.lastname@example.org.
Virginie Hivert, our Therapeutic Development Director, was a co-author in a position paper published this month by the Orphanet Journal of Rare Diseases. The position paper, 'How to START? Four pillars to optimally begin your orphan drug development' details best practices for initiating the process of developing medicines to treat rare conditions. The paper proposes a 'START' checklist relating to key considerations when starting an orphan drug development: STakeholder mapping, Available information on the disease, Resources, and Target patient value profile.
People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore, the rare disease community has increased exposure to social inequality and discrimination, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support, there will continue to be a detrimental impact on the mental health of those affected by rare conditions, hindering them from effective participation in society.
This webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma, ending with a discussion on the impact of living with congential malformations.
The outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action.
Finding new uses for existing medicines
In our latest episode of Rare on Air, host Julien Poulain explores the potential of drug repurposing, which is the process by which new uses are discovered for already existing medicines. Julien is joined by Leonardo Panzeri, President of Italian Osteogenesis Imperfecta Association, and EURORDIS colleagues Claudia Fuchs and Judit Baijet, who all discuss the importance of patient advocates in drug repurposing efforts, as well as the EU-funded REMEDi4ALL project
Rare Disease Moonshot, a coalition of seven organisations of which EURORDIS is a member, has issued recommendations to funders, researchers, patients, industry and other stakeholders on where public-private partnerships would bring most value in optimising clinical trials. The recommendations also include points to consider when setting up such collaborations that address the unmet needs of the rare disease community.
Best practices in mental health
Upon acknowledging the distinct mental wellbeing needs of those with chronic illnesses, the European Commission has launched a call for best practices on mental health. The Commission is seeking examples of best and promising practices on mental health from governmental and non-governmental entities, which can be submitted via the EU Best Practice Portal by Friday 29 September.
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]//
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