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Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.

The ins and outs of fundraising law-made easy-from nonprofit law authority Bruce Hopkins Author Bruce R. Hopkins-a leading authority on the laws regulating fundraising-offers essential, practical legal information in easy-to-understand English. His practical tips and \"red flags\" provide useful advice and present critical information in an efficient and comprehensible fashion. Now your organization can be fully informed about the basic legal requirements affecting fundraising and avoid the perils lurking in the myriad tax-law traps. Fundraising Law Made Easy clearly shows you how, with everything you need to know about The fundraising process State charitable solicitation acts Federal tax charitable giving rules Requirements of the new Form 990 How constitutional law, governance, and IRS audit practices pertain to charitable fundraising Expert advice from Bruce Hopkins, the author of more than 20 books on nonprofit counsel, including The New Form 990 and Charitable Giving Law Made Easy Mandatory reading whether you are a charitable organization development officer, fundraising consultant, a trustee, or a director, Fundraising Law Made Easy illuminates the rules surrounding charitable giving, and authoritatively and thoroughly guides you through every aspect of its laws.

Context: For more than a century, policy in the United States has incentivized both expansion in the number and size of tax-exempt nonprofit organizations in the health sector and their commercialization. The implementation of the Affordable Care Act of 2010 (ACA) began yet another chapter in the history of this policy paradox. Methods: This article explores the origin and persistence of the paradox using what many scholars call \"interpretive social science.\" This methodology prioritizes history and contingency over formal theory and methods in order to present coherent and plausible narratives of events and explanations for them. These narratives are grounded in documents generated by participants in particular events, as well as conversations with them, observing them in action, and analysis of pertinent secondary sources. The methodology achieves validity and reliability by gathering information from multiple sources and making disciplined judgments about its coherence and correspondence with reality. Findings: A paradox with deep historical roots persists as a result of consensus about its value for both population health and the revenue of individuals and organizations in the health sector. Participants in this consensus include leaders of governance who have disagreed about many other issues. The paradox persists because of assumptions about the burden of disease and how to address it, as well as about the effects of biomedical science that is translated into professional education, practice, and the organization of services for the prevention, diagnosis, treatment, and management of illness. Conclusions: The policy paradox that has incentivized the growth and commercialization of nonprofits in the health sector since the late 19th century remains influential in health policy, especially for the allocation of resources. However, aspects of the implementation of the ACA may constrain some of the effects of the paradox.

We examined whether state laws and district policies pertaining to nutritional restrictions on school fundraisers were associated with school policies as reported by administrators in a nationally-representative sample of United States public elementary schools. We gathered data on school-level fundraising policies via a mail-back survey during the 2009-10 and 2010-11 school years. Surveys were received from 1,278 public elementary schools (response rate = 60.9%). Data were also gathered on corresponding school district policies and state laws. After removing cases with missing data, the sample size for analysis was 1,215 schools. After controlling for school characteristics, school policies were consistently associated with state laws and district policies, both those pertaining to fundraising generally, as well as specific restrictions on the sale of candy and soda in fundraisers (all Odds Ratios >2.0 and Ps<.05). However, even where district policies and state laws required fundraising restrictions, school policies were not uniformly present; school policies were also in place at only 55.8% of these schools, but were more common at schools in the West (77.1%) and at majority-Latino schools (71.4%), indicating uneven school-level implementation of district policy and state law. District policies and state laws were associated with a higher prevalence of elementary school-level fundraising policies, but many schools that were subject to district policies and state laws did not have school-level restrictions in place, suggesting the need for further attention to factors hindering policy implementation in schools.

Raising funds to fulfill a nonprofit organization's goals is critical to its success, but fundraising regulations are an increasingly complex maze. The Law of Fundraising, Fifth Edition is the definitive guide to demystifying federal and state fundraising regulations. With new discussion on Internet fundraising, political fundraising laws, and international fundraising, this book details federal and state laws, with an emphasis on administrative, tax, and constitutional laws. This guide is supplemented annually to keep nonprofit professionals on top of the latest fundraising legal developments.

Volunteers and charitable organizations contribute significantly to community welfare through their prosocial behavior: that is, discretionary behavior such as assisting, comforting, sharing, and cooperating intended to help worthy beneficiaries. This essay focuses on prosocial behavior on the Internet. It describes how offline charitable organizations are using the Net to become more efficient and effective. It also considers entirely new models of Net-based volunteer behavior directed at creating socially beneficial information goods and services. After exploring the scope and diversity of online prosocial behavior, the essay focuses on ways to encourage this kind of behavior through appropriate task and social structures, motivational signals, and trust indicators. It concludes by asking how local offline communities ultimately could be diminished or strengthened as prosocial behavior increases online.

Untangle the web of fundraising regulations, with the latest updates for 2019 The Law of Fundraising  is the definitive reference by the field's most respected authority, and the  only  book to tackle the increasingly complex maze of federal and state fundraising regulations.

Schmidt uses the history of political thought to offer a new history of the English charity-school movement of the early eighteenth century. Charity schools offer an important case study for understanding the complicated ways in which social hierarchy, authority, and mutual obligation were construed in the early eighteenth century. Relying on both the homiletic literature on charity and the administrative records of the charity schools themselves, he builds a case for using the charity schools projects as a key means for understanding the complicated connections between early modern ideals of authority and obligation. Ideals of natural law, philanthropy, and paternalism both animated and were challenged by the practical challenges of instituting charity schools. Reprinted by permission of the University of Chicago Press. © All rights reserved