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1.
Conserv Biol ; 38(4): e14272, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38622959

RESUMO

Funding decisions influence where, how, and by whom conservation is pursued globally. In the context of growing calls for more participatory, Indigenous-led, and socially just conservation, we undertook the first empirical investigation of how philanthropic foundations working in marine conservation globally engage communities in grant-making decisions. We paid particular attention to whether and how community engagement practices reinforce or disrupt existing power dynamics. We conducted semistructured remote interviews with 46 individuals from 32 marine conservation foundations to identify how conservation foundations engage communities in setting their priorities and deciding which organizations and projects to fund. We found that community engagement in foundation decision-making was limited in practice. Eleven of the 32 foundations reported some form of community engagement in funding decisions. Two of these foundations empowered communities to shape funding priorities and projects through strong forms of engagement. Many engagement practices were one way, one time, or indirect and confined to certain points in decision-making processes. These weaker practices limited community input and reinforced unequal power relations, which may undermine the legitimacy, equity, and effectiveness of conservation efforts. We suggest that foundations aim for stronger forms of community engagement and reflect on how their grant-making practices affect power relations between foundations and communities.


Participación comunitaria y dinámicas de poder en la concesión de subsidios para la filantropía de la conservación Resumen Realizamos la primera investigación empírica sobre la forma en que las fundaciones filantrópicas que trabajan con la conservación marina a nivel mundial involucran a las comunidades en las decisiones para la concesión de subsidios. Prestamos especial atención a cómo y si las prácticas de participación ciudadana refuerzan o interrumpen las dinámicas de poder existentes. Entrevistamos de forma remota a 46 individuos de 32 fundaciones de conservación marina para identificar cómo las fundaciones de conservación involucran a las comunidades para establecer sus prioridades y decidir cuáles organizaciones y proyectos financiar. Encontramos que la participación comunitaria en las decisiones de financiamiento estaba limitada en la práctica. Once de las 32 fundaciones reportaron algún tipo de participación ciudadana en sus decisiones de financiamiento. Dos de estas fundaciones empoderaron a las comunidades para que formaran las prioridades de financiamiento y a los proyectos por medio de una participación sólida. Muchas de las prácticas de participación eran de una manera, de una vez o indirectas y confinadas a ciertos puntos en el proceso de decisión. Estas prácticas más débiles limitaron la aportación comunitaria y reforzaron las relaciones desiguales de poder, lo que puede debilitar la legitimidad, equidad y eficiencia de los esfuerzos de conservación. Sugerimos que las fundaciones busquen maneras más sólidas de involucrar a la comunidad y reflexionen sobre el efecto de sus prácticas de concesión de subsidios sobre las relaciones de poder entre las fundaciones y las comunidades.


Assuntos
Participação da Comunidade , Conservação dos Recursos Naturais , Conservação dos Recursos Naturais/métodos , Conservação dos Recursos Naturais/economia , Tomada de Decisões , Obtenção de Fundos , Organização do Financiamento
2.
Prev Sci ; 25(1): 108-118, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36757659

RESUMO

Racial disparities in maternal birth outcomes are substantial even when comparing women with similar levels of education. While racial differences in maternal death at birth or shortly afterward have attracted significant attention from researchers, non-fatal but potentially life-threatening pregnancy complications are 30-40 times more common than maternal deaths. Black women have the worst maternal health outcomes. Only recently have health researchers started to view structural racism rather than race as the critical factor underlying these persistent inequities. We discuss the economic framework that prevention scientists can use to convince policymakers to make sustainable investments in maternal health by expanding funding for doula care. While a few states allow Medicaid to fund doula services, most women at risk of poor maternal health outcomes arising from structural racism lack access to culturally sensitive caregivers during the pre-and post-partum periods as well as during birth. We provide a guide to how research in health services can be more readily translated to policy recommendations by describing two innovative ways that cost-benefit analysis can help direct private and public funding to support doula care for Black women and others at risk of poor birth outcomes.


Assuntos
Doulas , Disparidades em Assistência à Saúde , Serviços de Saúde Materna , Complicações na Gravidez , Feminino , Humanos , Recém-Nascido , Gravidez , Análise Custo-Benefício , Estados Unidos , Grupos Raciais , Saúde Materna , Complicações na Gravidez/prevenção & controle
3.
Matern Child Health J ; 27(Suppl 1): 177-181, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37755582

RESUMO

BACKGROUND: Many pregnant and parenting people with substance use disorders (SUD) refrain from seeking perinatal care or treatment for their SUD for fear of being treated poorly by health care providers and/or triggering a child welfare investigation. For those who do seek treatment, there are relatively few clinicians willing and able to prescribe medications for opioid use disorder (MOUD) to pregnant people. Both stigma and lack of access to treatment put many pregnant and parenting people at risk. Drug-related deaths contribute significantly to U.S. maternal mortality rates, with people at especially high risk of drug overdose in the months following delivery. METHODS: The Foundation for Opioid Response Efforts (FORE) is a national philanthropy focused on finding and fostering solutions to the opioid crisis. We draw lessons from our grantees' efforts to expand access to substance use treatment and recovery supports for pregnant and parenting people. RESULTS: To build systems of care that ensure more pregnant people get timely perinatal care, we need to expand training for perinatal providers on how to provide OUD treatment, clarify child welfare reporting rules, and engage and support trusted organizations and community-based services. CONCLUSIONS: In addition to changes to our systems of SUD treatment and recovery, we need greater philanthropic investment in efforts to combat the public health crisis of substance use and overdose among pregnant and parenting people. Private funders have the leeway to act quickly, take risks, and demonstrate the effectiveness of new approaches, building the case for investment of public resources in such initiatives.


Assuntos
Medo , Transtornos Relacionados ao Uso de Opioides , Criança , Feminino , Gravidez , Humanos , Analgésicos Opioides , Proteção da Criança , Saúde da Família , Transtornos Relacionados ao Uso de Opioides/terapia
4.
Int J Hosp Manag ; 113: 103530, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37292494

RESUMO

Using fuzzy-set qualitative comparative analysis, this paper explores which configurations of six dimensions of hospitality firms' corporate social responsibility (CSR) result in higher (or lower) levels of total factor productivity. We demonstrate that different categories of stakeholders and hospitality firms' dynamic capabilities complement each other under the framework of configurational theory. The result shows that: 1) The CSR dimensions of product quality, CSR communication, and environmental protection are critical to high levels of firm performance; 2) After the pandemic, hospitality firms should make investment in CSR communication and environmental protection a priority; 3) Hospitality firms' choice to invest in a specific combination of dimensions of CSR practice should depend on their overall level of corporate governance (high or low). This paper contributes to the strategic management and corporate governance literature by identifying the role of hospitality firms' governance on the linkage between CSR investment strategy and firm performance.

5.
Adm Soc ; 55(7): 1402-1431, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38602975

RESUMO

Scholars and policymakers have long been interested in the complex relationships between political institutions and voluntary collective action. However, the reciprocal nature of their relationships complicates empirical analysis: voluntary action supports democratic institutions and political institutions enable voluntary action. This article examines the relationship between political institutions and the activation of local voluntary action in the context of COVID-19 funds managed by community philanthropic organizations. We find that political engagement, policy signaling, and political competition all support the emergence of a COVID-19 fund. The findings advance our understanding of the significant role that political institutions play in activating voluntary action.

6.
Global Health ; 18(1): 21, 2022 02 21.
Artigo em Inglês | MEDLINE | ID: mdl-35189901

RESUMO

BACKGROUND: In recent years, genetically engineered (GE) mosquitoes have been proposed as a public health measure against the high incidence of mosquito-borne diseases among the poor in regions of the global South. While uncertainties as well as risks for humans and ecosystems are entailed by the open-release of GE mosquitoes, a powerful global health governance non-state organization is funding the development of and advocating the use of those bio-technologies as public health tools. In August 2016, the US Food and Drug Agency (FDA) approved the uncaged field trial of a GE Aedes aegypti mosquito in Key Haven, Florida. The FDA's decision was based on its assessment of the risks of the proposed experimental public health research project. The FDA is considered a global regulatory standard setter. So, its approval of the uncaged field trial could be used by proponents of GE mosquitoes to urge countries in the global South to permit the use of those bio-technologies. METHOD: From a public health ethics perspective, this paper evaluates the FDA's 2016 risk assessment of the proposed uncaged field trial of the GE mosquito to determine whether it qualified as a realistic risk evaluation. RESULTS: The FDA's risk assessment of the proposed uncaged field trial did not proximate the conditions under which the GE mosquitoes would be used in regions of the global South where there is a high prevalence of mosquito-borne diseases. CONCLUSION: Given that health and disease have political-economic determinants, whether a risk assessment of a product is realistic or not particularly matters with respect to interventions meant for public health problems that disproportionately impact socio-economically marginalized populations. If ineffective public health interventions are adopted based on risk evaluations that do not closely mirror the conditions under which those products would actually be used, there could be public health and ethical costs for those populations.


Assuntos
Aedes , Saúde Pública , Aedes/genética , Animais , Ecossistema , Humanos , Mosquitos Vetores
7.
Ethical Theory Moral Pract ; 25(5): 755-775, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36466110

RESUMO

In this essay we argue against preventing people from amassing extreme wealth via increased taxation. The first argument in favor of such a proposal, recently advanced by Ingrid Robeyns (2018), states that billionaires' resources would be better spent addressing morally important goals such as meeting disadvantaged people's needs and solving collective action problems. In response to this claim, we argue that billionaires are typically in a better position to benefit the poor and to solve collective action problems than public officials. The second argument in favor of preventing extreme wealth accumulation, advanced by Robeyns and Robert Reich (2018), states that billionaires have an inappropriate amount of influence in public life, which undermines political equality. We argue that corporate leaders tend to be more accountable to their fellow citizens than public officials. We then consider and criticize the objection that billionaires' success is typically a result of public investment, which entitles public officials to enforce taxes that demand a return on the public investment.

8.
Harm Reduct J ; 19(1): 124, 2022 11 16.
Artigo em Inglês | MEDLINE | ID: mdl-36384634

RESUMO

BACKGROUND: Hospital-based harm reduction services are needed to reduce drug-related harms, facilitate retention in care, and increase medical treatment adherence for people who use drugs. Philanthropic donor support plays a key role in delivering such innovative services which might fall outside current funding streams. However, little is known about how the principles, implementation, and practice of harm reduction services, which are often highly stigmatized, may impact donor behaviours. We explored this issue within Casey House, a speciality hospital in Toronto, Canada. METHODS: Our mixed methods study utilized an explanatory sequential design. A convenience sample of n = 106 philanthropic individual donors, recruited via email, completed an anonymous web-based survey, between July and October 2020, which assessed their knowledge of harm reduction services and the potential impact of implementing new hospital-based harm reduction services on donors' future support. Following this, we conducted semi-structured qualitative interviews with n = 12 of the donors who completed a survey and volunteered to be interviewed. Interviews examined donors' perspectives about harm reduction and their hopes/concerns for such programming at Casey House. Data were analysed using descriptive statistics and participatory-based thematic analysis. RESULTS: Survey data show a high level of support for hospital-based harm reduction services, with participants reporting that they "strongly agree/agree" with providing harm reduction equipment (85%), supervised consumption services (82%), and prescription opioid treatment (76%) at Casey House. A majority of participants (66%) claimed that implementing new harm reduction services at the hospital would not impact their future donation, while 6% said they would be less inclined to donate. Interview participants were supportive of harm reduction services at Casey House, recognizing the benefits of providing such services for hospital clients and the wider community. However, some spoke of the potential impact that implementing hospital-based harm reduction services may have on "other" donors who might be opposed. Although some believed harm reduction services should be fully funded by the government, most saw a role for donors in supporting such services. CONCLUSIONS: Our findings show support of hospital-based harm reduction services among philanthropic donors and provide insight into how donor support may be affected when such services are introduced.


Assuntos
Síndrome da Imunodeficiência Adquirida , Obtenção de Fundos , Humanos , Redução do Dano , Hospitais , Inquéritos e Questionários
9.
Voluntas ; : 1-11, 2022 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-35971536

RESUMO

The article argues that in Denmark during the past 150 years, moral elites have been central in settling paradoxes within social policy by developing 'classifications' of citizens and sectors: who are deserving of help and what sector (public or third) should provide care. Contrary to widely held beliefs, historically, there is no logical or practical connection between 'more deserving' and 'state support'. Theoretically, the article integrates elite scholarship and cultural sociology in developing a concept of moral elites' power from-their sources of moral authority-and power to, the way that they have used their power to classify citizens and sectors. Empirically, the Danish moral elite and its involvement in social policy are analyzed based on secondary as well as primary historical sources. Findings: The development of the Danish moral elite has roots in the administrators of the nineteenth-century absolutist state: the clergy, medical doctors, and lawyers. Educational resources and state affiliation continue to be central to moral elite status. Economists have ascended to the top of the moral elite, while clergymen have dropped out. Three major classifications were developed during the period. 'Help to self-help' (late nineteenth century): deserving poor should receive help from private charity, while the public system should deter and discipline. 'Rights' (mid-twentieth century): the state should care for all, philanthropy mostly considered stigmatizing. 'Workfare' (late twentieth century to present): citizens are considered deserving as long as they are 'active', and sectors are considered equal in providing for citizens as long as they reach the economistic goal of activation.

10.
J Hist Behav Sci ; 58(1): 85-104, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33524159

RESUMO

Little has been written on the financial support behind Timothy Leary's unorthodox research into mind-altering drugs like LSD and psilocybin and his subsequent psychedelic movement. Indeed several individuals and organizations helped the psychedelic cause by directly funding Leary's ventures, offering legal and logistic assistance, and organizing fund-raising campaigns. I argue that classic philanthropic attitudes and wealthy patrons played a major supporting role for Leary's psychedelic movement in the first part of the decade and that the changes in Leary's research objectives and his transition from academic to LSD guru were accompanied by changes in the patterns of support that occurred throughout the 1960s. This paper also connects Leary's legal troubles in the second part of the decade with the rise of the movement to legalize cannabis and points to historical continuity by looking at contemporary endeavors to fund psychedelic research.


Assuntos
Cannabis , Obtenção de Fundos , Alucinógenos , Humanos , Psilocibina
11.
Voluntas ; : 1-16, 2022 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-36575735

RESUMO

Philanthropy seeks to address deep-rooted social issues and assume responsibility for the creation of public goods not provided by the public sector-and in this way help reduce inequality. Yet philanthropy has also been criticized for bypassing democratic mechanisms for the public determination of how to invest in society-and thus may perpetuate other inequities. In both cases, inequality, defined as asymmetries of resources and power, plays a critical role in public goods creation and in the legitimacy of a country's philanthropic ecosystem. However, little empirical research examines the existence and role of inequality in country-level donation systems. To fill this gap, this study provides evidence of growing donation concentration in Chile's philanthropic ecosystem, with a focus on the culture sector, characterizes it by mapping systematic differences in ecosystem perceptions by actor type, and identifies and tests statistically structural and organizational factors associated with these perceptions. Inequality in Chile's donation system operates at multiple geographical, legal, and organizational levels, all of which are reflected in objective donation amounts and subjective ecosystem perceptions. We conclude that in Chile resource asymmetries and power imbalances hinder the fulfillment of philanthropy's promise and call for further research to identify policies that address inequities in emerging philanthropic ecosystems in Chile, Latin America, and beyond.

12.
Corp Soc Responsib Environ Manag ; 29(2): 339-355, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35465450

RESUMO

The COVID-19 epidemic broke out in China in January 2020, which triggered the largest wave of corporate philanthropic donations since the 2008 Sichuan earthquake. Based on A-share listed firms in the Shanghai and Shenzhen stock exchanges in 2020, we study whether substantive and symbolic corporate social responsibility (CSR) strategies affect corporate philanthropic responses during the COVID-19 crisis. We use the lagged annual donation and technical dimension scores (T scores) of rankins ratings (RKS) as proxies of CSR performance and CSR disclosure and then define the CSR gap as the gap between the two. The results show that substantive and symbolic strategies cause firms to have material differential responses in the COVID-19 crisis. Specifically, the CSR gap is negatively related to the possibility and the level of crisis donation. In addition, (1) this difference is more pronounced in the earlier period of the COVID-19 crisis; (2) the negative correlation is more pronounced in private firms; and (3) the crisis donation of firms with either strategy obtains no different response from the capital market. Our evidence suggests that the established CSR strategy influences the substantive response of Chinese firms to public emergencies, but their substantive response does not result in different reactions in the capital market.

13.
Recent Results Cancer Res ; 218: 175-200, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34019169

RESUMO

Terminal chaperonage embedded in palliative care deeply resonates with human needs and has undergone significant advances in the past decades. At the same time, it is in jeopardy due to austerity measures in healthcare. Its comprehensive translation in philanthropic end-of-life practice necessitates reflection on underlying ethical issues. This chapter addresses ethical aspects arising in pain and terminal chaperonage and deduces important ethical imperatives in the wake of the palliative mandate. The imperatives affect the deployment of resources necessary for a humane pain and terminal chaperonage, one that is to be comprehensive and flexible in design and implementation at the same time. Furthermore, they are concerned with critical implications for dying clients emerging from the idiosyncratic properties of opioids with respect to their potential to induce mental status alterations. Given that living and dying are profoundly mental by nature, the human mind plays a fundamental role in the command of both. Based on this, this chapter also outlines the essentials of terminal thought plasticity and affect catharsis en route to a mindful, decent death. It identifies and advocates eight most fundamental affective, respectively cognitive fields of the human mind, the "Ensemble of the essential eight iridescent fields of relinquishment", whose adaptable, culturally sensitive facilitation in mental management prior to death may have to be considered the core ethical imperative in terminal chaperonage - in true congruence with philanthropic end-of-life care.


Assuntos
Assistência Terminal , Humanos , Dor , Cuidados Paliativos
14.
Dev Psychopathol ; 33(2): 431-440, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33955338

RESUMO

Ed Zigler believed that developmental science should be applied to policy, programs, and practices to improve the lives of children and families. He shared this belief with others and paved the way for alternative career pathways. This paper describes how Ed influenced others to connect science with program development, evaluation, and policy, and created networks of applied scholars. Ed Zigler's influence is broad and spans beyond academia to influencer organizations. We weave our own professional experiences throughout the paper, which we organized around three lessons we learned from Ed: (a) explore alternative career pathways and build the field; (b) start with the science and think application; (c) apply the knowledge and influence policy.


Assuntos
Aprendizagem , Política Pública , Criança , Humanos , Conhecimento , Masculino , Desenvolvimento de Programas
15.
J Community Psychol ; 49(8): 3215-3231, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34551131

RESUMO

Philanthropic foundations play a major role in supporting community organizing efforts around the country. Even as they provide millions of dollars each year to enable organizing, they have also come under significant criticism for investment approaches that sometimes hinder and even undermine the core goals of organizing itself. This paper focuses on reflections from a funder seeking to support community organizing and the challenges of doing so within the structures of the philanthropic community. In particular the paper examines the way notions of power, theories of change used to justify philanthropic investments, and entrenched assumptions about social change shape the ability of funders to leverage their perch to support organizing. The paper also contextualizes these reflections in a broader debate about the appropriate relationship between funders and grassroots organizing.


Assuntos
Obtenção de Fundos , Humanos , Mudança Social , Estados Unidos
16.
Decis Support Syst ; 140: 113427, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33100446

RESUMO

Crowdfunding was first used by individuals and entrepreneurs to collect small-sized investments from crowds to support for-profit ventures, but now it is being touted as a valuable alternative to raise money for non-profit causes. Similar to various online settings, a key challenge for online charitable crowdfunding platform is the problem of donor retention. In this research, we disentangle donor retention behavior and build up a structural model to jointly examine donors' donation and latent attrition. By incorporating donation relationship and action related covariates into the model, we illustrate the drivers of donor retention and quantitatively examine their influence on individual donor's contribution and attrition activity. After calibrating the model with longitudinal donation transaction data from a leading charitable crowdfunding platform which enables teachers to request materials and resources for their classrooms, we find that (1) Teacher-donors (people who can be both donation makers and fundraisers) usually exhibit higher donation rate and lower attrition rate than normal donors on the platform; (2) Compared with site-donors (donors directly acquired through website visit), donors acquired through teacher referral usually have lower contribution and attrition rates; (3) The provided "charity gift card" and "donation matching offer" prosocial marketing programs on the platform seem to be a double-edged sword to donor retention. They have positive impact on donors' contribution rate, at the same time, they significantly increase donors' attrition rate; (4) Donors' initial contribution amount to the platform, successful donation result and "Thank-You" feedback from fundraisers can significantly decrease their attrition rate. Our results provide insights on new donor acquisition and donor relationship management in online charitable crowdfunding market.

17.
Tour Manag ; 85: 104322, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34815613

RESUMO

During the novel coronavirus (COVID-19) pandemic, some hotels have engaged in corporate social responsibility (CSR) activities to help overcome the crisis. Given that most existing research examines the impact of hotel CSR on a single stakeholder, how hotel CSR activities in a crisis are perceived by multiple stakeholders is unknown. Drawing on the concept of strategic philanthropy, this study examines the impact of hotel CSR activities during the pandemic, such as providing accommodations to healthcare workers, on hotel firms' market value and prospective hotel customers' booking behavior. Adopting mixed-methods approach, this study finds negative impacts of hotel CSR for strategic philanthropy on firm market value and customer booking behavior. The study result indicates that the value of hotel CSR depends on the nature and environmental contexts of CSR. Specific theoretical and practical implications are provided.

18.
Voluntas ; 32(2): 185-193, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33785992

RESUMO

This article is intended as the leading article in a special issue devoted to the achievements, limitations, opportunities and risks entailed in the research and practice of contemporary philanthropy. The article first characterizes philanthropy as a highly diverse and dynamic set of social practices that has only recently been subject to the systematic scrutiny of an emerging field of research, parallel to its rapid transformation and increased societal visibility. The main debates that emerged during the last two decades while researching the complexities of contemporary philanthropy are contextualized from the perspective of multiple disciplines; and the main foci for contentious conceptualizations and societal expectations explored. In this context, contributions of the special issues are summarized. Further avenues for pushing the boundaries of philanthropy research in ways inclusive of the dynamism, diversity, multi-disciplinarity and controversy that characterize the field, while at the same time providing meaningful answers to societal concerns about the potential and shortcomings of new philanthropic practices, are drawn.

19.
Society ; 58(2): 120-130, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34054165

RESUMO

Billionaire philanthropists claim to play a key role in advancing well-being and public goods across the world. One of the most prominent recent expressions of these efforts is the Giving Pledge, created in 2010 by Bill and Melinda Gates in collaboration with Warren Buffett. After a decade of its existence, this analysis of the Giving Pledge population and its commitment letters shows an overall dominance of white, male, and US-based billionaires among the signatories. Tech billionaires are a wealthier and younger subgroup of pledgers than their counterparts in other industries. The pledge letters reveal an emphasis on education and health as dominant philanthropic causes. Among explanations for giving, the four most frequent reasons mentioned are a desire to make a difference, a wish to give back, a sense of personal fulfillment resulting from giving, and references to being socialized into philanthropic giving early in life. While the Giving Pledge is the most prominent global effort to increase philanthropic giving among the wealthy, the voluntary nature and relatively modest commitment goal make it difficult to assess its significance and impact.

20.
Am J Med Genet C Semin Med Genet ; 184(3): 838-845, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32783387

RESUMO

The Foundation Fighting Blindness is a 50-year old 501c(3) non-profit organization dedicated to supporting the development of treatments and cures for people affected by the inherited retinal diseases (IRD), a group of clinical diagnoses that include orphan diseases such as retinitis pigmentosa, Usher syndrome, and Stargardt disease, among others. Over $760 M has been raised and invested in preclinical and clinical research and resources. Key resources include a multi-national clinical consortium, an international patient registry with over 15,700 members that is expanding rapidly, and an open access genetic testing program that provides no cost comprehensive genetic testing to people clinically diagnosed with an IRD living in the United States. These programs are described with particular focus on the challenges and outcomes of establishing the registry and genetic testing program.


Assuntos
Acesso à Informação , Testes Genéticos , Doenças Retinianas/diagnóstico , Doenças Retinianas/genética , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mutação/genética , Organizações sem Fins Lucrativos , Sistema de Registros , Doenças Retinianas/classificação , Doenças Retinianas/epidemiologia , Adulto Jovem
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