RESUMEN
Introduction: In 2022, the Minister for Health of Singapore launched Healthier SG, a national strategy in championing the shift towards a population health approach. Method: The Singapore Heart Foundation conducted a series of roundtable discussions, also attended by representatives of the Singapore Cardiac Society and the Chapter of Cardiologists of the Academy of Medicine Singapore. During the meetings, the authors formulated interventions supportive of Healthier SG that specifically aimed to uplift the state of cardiovascular (CV) preventive care in Singapore. Results: In line with Healthier SG, the authors propose a 3-pronged approach ("Healthier Heart SG") to augment the success of Healthier SG in achieving good CV outcomes. This proposal includes the following components: (1) a call to update the standards of care in addressing the 5 main modifiable risk factors of cardiovascular disease (CVD); (2) patient education through cooperation between healthcare professionals and community partners for a whole-of-system approach; and (3) support for integrated care, including access to cardiac rehabilitation in the community, improved referral processes and access to nutrition/dietetics counselling and tobacco cessation, optimal use of information technology, and continued CV research. Conclusion: Healthier Heart SG would bring the standards of care and CV care delivery in Singapore closer to achieving the vision of proactive prevention of CVD and CV morbidity and mortality. This can only be achieved through the concerted efforts of healthcare professionals, policymakers and community partners, coupled with the cooperation of community members.
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Enfermedades Cardiovasculares , Sociedades Médicas , Singapur/epidemiología , Humanos , Enfermedades Cardiovasculares/prevención & control , Cardiología/organización & administración , Educación del Paciente como Asunto , Rehabilitación Cardiaca/métodos , Fundaciones/organización & administración , Factores de Riesgo de Enfermedad CardiacaRESUMEN
Philanthropic foundations played a crucial role in rationalizating and organizing American society in the late 19th and early 20th centuries. The promotion of science was applied to medical reform, leading to the advent of genuine medical research within the framework of brand-new university hospital faculties. With the two world wars, the state became heavily involved in the field of healthcare. After 1945, it became the main source of funding for biomedical research. Philanthropy did not disappear from the institutional landscape; it continued to work in tandem with public authorities. Its role in medical research is now minor in terms of funding volume, but a strategic one in the development of projects aimed at advancing basic science and knowledge of various diseases.
Title: La philanthropie médicale aux États-Unis. Abstract: Les fondations philanthropiques ont pris une part décisive dans la rationalisation et l'organisation de la médecine dans la société américaine des débuts du xxe siècle, période pendant laquelle la promotion de la science a donné lieu à l'avènement d'une véritable recherche médicale spécialisée dans le cadre des nouvelles facultés hospitalo-universitaires. Avec les deux guerres mondiales, l'État fédéral s'est fortement engagé dans le champ de la santé. Au point qu'après 1945, il est devenu la principale source de financement de l'innovation biomédicale. La philanthropie ne disparaît pas pour autant du paysage institutionnel. Elle continue de fonctionner en tandem avec les pouvoirs publics. Son rôle est aujourd'hui minoritaire en termes de volume de financement, mais stratégique dans l'avènement de projets visant à faire avancer les connaissances sur des processus fondamentaux ainsi que sur de nombreuses maladies.
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Obtención de Fondos , Historia del Siglo XX , Estados Unidos , Obtención de Fondos/economía , Obtención de Fondos/historia , Obtención de Fondos/tendencias , Humanos , Historia del Siglo XIX , Investigación Biomédica/historia , Investigación Biomédica/economía , Investigación Biomédica/tendencias , Investigación Biomédica/organización & administración , Historia del Siglo XXI , Fundaciones/historia , Fundaciones/economía , Fundaciones/organización & administraciónRESUMEN
The Animal Welfare Foundation (AWF) has welcomed seven new trustees to its board. The newly appointed trustees bring expertise from many different specialisms.
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Fundaciones , Síndicos , Humanos , Bienestar del Animal , Fundaciones/organización & administraciónAsunto(s)
Enfermedades de la Aorta/genética , Enfermedades Raras/genética , Enfermedades de la Aorta/diagnóstico , Enfermedades de la Aorta/terapia , Investigación Biomédica/economía , Financiación Gubernamental/organización & administración , Fundaciones/organización & administración , Humanos , National Institutes of Health (U.S.)/economía , Enfermedades Raras/diagnóstico , Enfermedades Raras/terapia , Estados UnidosRESUMEN
In mobilizing funds that selectively support non-profits, foundations shape the political field. This study maps the funding relationships between foundations, ENGOs and think tanks in Canada and considers the implications for environmental politics. We examine foundation funding for different strains of environmental politics and policy-planning and consider how ENGOs and think tanks are clustered as communities within a foundation-centred support network. Of particular interest are 'clean growth' ENGOs that have emerged as key proponents of business-friendly approaches to the climate crisis. We find that the ENGOs receiving large grants tend to be conservationist while the think tanks tend to be conservative. Communities in the network are divided between several clusters of corporate and family foundations supporting conservative think tanks, clean growth ENGOs and conservationist ENGOs, and a segment of the network in which one municipal and several family foundations, support more social-ecological organizations, thereby facilitating more transformative visions and policies. Although few in number, clean growth organizations tend to receive giant donations, in some cases from corporate foundations aligned with the fossil-fuel sector. Recent adoption of clean growth as governmental policy and its embrace within philanthropic missions could reshape the environmental field towards 'clean growth', as ENGOs seek funding and legitimacy.
En mobilisant des fonds qui soutiennent sélectivement des organismes sans but lucratif, les fondations façonnent le champ politique. Cette étude cartographie les relations de financement entre les fondations, les ONGE et les groupes de réflexion au Canada et examine les implications pour les politiques environnementales. Nous examinons le financement des fondations pour différents types de politiques environnementales et de planification des politiques et nous étudions comment les ONGE et les groupes de réflexion sont regroupés en tant que communautés au sein d'un réseau de soutien centré sur les fondations. Un intérêt particulier est porté aux ONGE de "croissance propre" qui sont devenues des partisans clés d'approches de la crise climatique favorables aux entreprises. Nous constatons que les ONGE qui reçoivent d'importantes subventions ont tendance à être conservationnistes, tandis que les groupes de réflexion ont tendance à être conservateurs. Les communautés du réseau sont divisées entre plusieurs groupes de fondations d'entreprise et familiales soutenant des groupes de réflexion conservateurs, des ONGE de croissance propre et des ONGE conservationnistes, et un segment du réseau dans lequel une fondation municipale et plusieurs fondations familiales soutiennent des organisations plus sociales-écologiques, facilitant ainsi des visions et des politiques plus transformatrices. Bien que peu nombreuses, les organisations de croissance propre ont tendance à recevoir des dons géants, dans certains cas de la part de fondations d'entreprises alignées sur le secteur des combustibles fossiles. L'adoption récente de la croissance propre en tant que politique gouvernementale et sa prise en compte dans les missions philanthropiques pourraient remodeler le domaine de l'environnement en faveur de la "croissance propre", les ONGE étant en quête de financement et de légitimité.
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Conservación de los Recursos Naturales/estadística & datos numéricos , Fundaciones/organización & administración , Organizaciones/organización & administración , CanadáAsunto(s)
COVID-19/patología , Dermatología/organización & administración , Líneas Directas/estadística & datos numéricos , Enfermedades de la Piel/patología , COVID-19/diagnóstico , COVID-19/epidemiología , COVID-19/psicología , Fundaciones/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Líneas Directas/tendencias , Humanos , Irlanda/epidemiología , Rol de la Enfermera , SARS-CoV-2/genética , Enfermedades de la Piel/diagnóstico , Enfermedades de la Piel/epidemiologíaAsunto(s)
Investigación Biomédica/organización & administración , Defensa del Paciente , Enfermedades Raras , Investigación Biomédica/normas , Congresos como Asunto/organización & administración , Congresos como Asunto/tendencias , Europa (Continente)/epidemiología , Fundaciones/organización & administración , Fundaciones/tendencias , Geografía , Historia del Siglo XXI , Humanos , Innovación Organizacional , Defensa del Paciente/normas , Defensa del Paciente/tendencias , Enfermedades Raras/epidemiología , Enfermedades Raras/etiología , Enfermedades Raras/terapia , Medios de Comunicación Sociales/organización & administración , Medios de Comunicación Sociales/normas , Medios de Comunicación Sociales/tendencias , Estados Unidos/epidemiologíaAsunto(s)
Dermatología/organización & administración , Fundaciones/organización & administración , Colaboración Intersectorial , Sociedades Científicas/organización & administración , Dermatólogos/organización & administración , Dermatología/métodos , Europa (Continente) , Humanos , Organizaciones sin Fines de Lucro/organización & administración , Investigadores/organización & administración , Enfermedades de la Piel/diagnóstico , Enfermedades de la Piel/terapiaRESUMEN
Primary immunodeficiencies (PI) are genetic defects of the immune system that result in chronic and often life-threatening infections and/or life-threatening autoimmunity if not diagnosed and treated. Patients with a suspected PI, but without a genetic diagnosis, commonly undergo a diagnostic odyssey that is costly, time-consuming, and arduous. This delay in diagnosis prevents appropriate disease management and treatment, contributing to prolonged suffering and decreased quality of life. Although next generation sequencing (NGS) can provide these patients with relief from such a diagnostic odyssey, it is often unavailable, mainly due to cost and inaccessibility. In January 2019, the Jeffrey Modell Foundation (JMF) launched a free genetic sequencing pilot program for Jeffrey Modell Centers Network (JMCN) patients clinically diagnosed with an underlying PI. A total of 21 sites within the JMCN were invited to participate. JMF collaborated with Invitae, and testing was comprised of Invitae's Primary Immunodeficiency Panel, which currently includes 207 genes. A questionnaire was disseminated to each participating physician to evaluate barriers to access to genetic sequencing and changes in disease management and treatment after testing. One hundred fifty-eight patients and 29 family members were tested in this pilot study. Twenty-one percent of patients with a suspected monogenic disorder received a molecular diagnosis, and others received potentially useful diagnostic leads. Based on the results of genetic sequencing, clinical diagnosis was altered in 45% of patients, disease management was altered in 40%, treatment was altered in 36%, and genetic counseling was altered in 62%. The results of this pilot program demonstrate the utility, cost-efficiency, and critical importance of NGS for PI and make the case for broad scale sequence-based diagnostics for PI patients when requested by expert immunologists.
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Fundaciones/economía , Pruebas Genéticas/economía , Accesibilidad a los Servicios de Salud/economía , Síndromes de Inmunodeficiencia/diagnóstico , Adolescente , Niño , Preescolar , Análisis Mutacional de ADN/métodos , Femenino , Fundaciones/organización & administración , Pruebas Genéticas/métodos , Variación Genética , Accesibilidad a los Servicios de Salud/organización & administración , Secuenciación de Nucleótidos de Alto Rendimiento/economía , Humanos , Síndromes de Inmunodeficiencia/genética , Masculino , Proyectos Piloto , Calidad de Vida , Índice de Severidad de la Enfermedad , Adulto JovenAsunto(s)
Antituberculosos/uso terapéutico , Erradicación de la Enfermedad/organización & administración , Carga Global de Enfermedades , Vacunas contra la Tuberculosis/inmunología , Tuberculosis/terapia , Antituberculosos/economía , Antituberculosos/farmacología , Investigación Biomédica/economía , Investigación Biomédica/organización & administración , Erradicación de la Enfermedad/economía , Erradicación de la Enfermedad/métodos , Desarrollo de Medicamentos/economía , Desarrollo de Medicamentos/métodos , Desarrollo de Medicamentos/organización & administración , Farmacorresistencia Bacteriana Múltiple/genética , Evolución Molecular , Fundaciones/economía , Fundaciones/organización & administración , Humanos , Esquemas de Inmunización , Inmunogenicidad Vacunal , Mycobacterium tuberculosis/efectos de los fármacos , Mycobacterium tuberculosis/genética , Mycobacterium tuberculosis/inmunología , Pobreza , Prevalencia , Desarrollo Sostenible , Tuberculosis/inmunología , Tuberculosis/microbiología , Tuberculosis/mortalidad , Vacunas contra la Tuberculosis/administración & dosificación , Vacunas contra la Tuberculosis/economíaRESUMEN
Patients with intestinal failure (IF) often require home parenteral and/or enteral nutrition (HPEN). There are many complications associated with both IF and the use of HPEN, including infection and intolerance. Psychosocial effects, such as depression, isolation, fatigue, anxiety, financial stress, are also associated with IF and HPEN and can be difficult to address. Support groups offer patients and caregivers the opportunity to talk to and learn from others who have had similar experiences. The Oley Foundation, a nonprofit organization for HPEN consumers, caregivers, and clinicians, fulfills the role of a traditional support group while offering many other resources and programs.
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Fundaciones/organización & administración , Grupos de Autoayuda , Información de Salud al Consumidor , Nutrición Enteral , Humanos , Síndromes de Malabsorción/psicología , Síndromes de Malabsorción/terapia , New York , Nutrición Parenteral en el Domicilio , Defensa del PacienteRESUMEN
The deletion of Arginine 14 of the phosholamban gene (PLN p.R14del) is associated with the pathogenesis of an inherited form of cardiomyopathy with prominent arrhythmias. Patients carrying the PLN R14del mutation are at risk of developing dilated cardiomyopathy or arrhythmogenic right ventricular cardiomyopathy. Although the genetic etiology is well defined, the molecular mechanism underlying the pathogenesis of PLN R14del-cardiomyopathy is unknown. Our CURE PLaN network, funded by the Foundation Leducq, will bring together leading scientists, clinicians, and patients to elucidate the genotype-phenotype relationships in R14del cardiomyopathy with the ultimate goal of developing innovative disease-specific therapeutic modalities. With the generous support of the Leducq Foundation, our Transatlantic Network of Excellence consortium to cure Phospholamban (PLN)-induced cardiomyopathy (CURE-PLaN) unites 6 leading centers to address the current challenges associated with arrhythmogenic right ventricular cardiomyopathy/dilated cardiomyopathy (DCM) with an initial focus on PLN and development of effective treatments. The Network is led by Evangelia (Litsa) Kranias (University of Cincinnati) in the United States and Pieter A. Doevendans (Netherlands Heart Institute/UMC Utrecht NL) in Europe. The other US project leaders are Kevin Costa (Cardiovascular Research Center, Icahn School of Medicine at Mount Sinai, New York) and Mark Mercola and Ioannis Karakikes (Stanford University), who are focusing on induced pluripotent stem cell (iPSC)-based disease models, tissue engineering, gene therapy, and drug discovery. On the European side, the project leaders are Despina Sanoudou (Biomedical Research Foundation of the Academy of Athens) analyzing the PLN interactome and Stephan Lehnart (University of Gottingen) addressing the subcellular and disrupted protein interactions affected in PLN-mutant cardiomyocytes. Other key members within the Netherlands Heart Institute are Peter van Tintelen on PLN genetics, Folkert Asselbergs on epigenetics and Rudolf de Boer on clinical trials. We are also privileged to get support from Arthur Wilde (University of Amsterdam), Sakthivel Sadayappan (University of Cincinnati), and Roger Hajjar (Phospholamban Foundation), who have had a long-standing interest in cardiac physiology and pathophysiology with emphasis on underlying pathways and potential therapeutic targets. The consortium is also fortunate to embrace a patient advocate, Pieter Glijnis, incorporating the voice of the patients to research in every step. Our goal is to build and share a platform of patient data coupled with in vitro and in vivo models to promote scientific discovery and advance novel treatments. Phospholamban is a small phosphoprotein in the cardiac sarcoplasmic reticulum, and it is the major regulator of SERCA2a activity and calcium (Ca)-cycling. Chronic inhibition of SERCA2a by PLN has been implicated in the aberrant Ca-cycling of failing hearts. Studies in HF models have shown that decreasing PLN activity may rescue cardiac remodeling and dysfunction. Several human PLN mutations, leading to inhibition of Ca-uptake into the sarcoplasmic reticulum, are linked to inherited DCM.