Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Background: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs.

Patient Interest in the Development of a Center for Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder in the Chicagoland Region.

Background: The Ehlers-Danlos Syndromes (EDS) are a set of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in the Chicagoland region.

Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations.

Experts in symptomatic generalized joint hypermobility (S-GJH) agree that upper cervical instability (UCI) needs to be better recognized in S-GJH, which commonly presents in the clinic as generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome. While mild UCI may be common, it can still be impactful; though considerably less common, severe UCI can potentially be debilitating. UCI includes both atlanto-occipital and atlantoaxial instability.

No one solution to the "new demarcation problem"?: A view from the trenches.

The new demarcation problem asks whether and how we can identify illegitimate values in scientific inquiry. Yet given the multiple contexts and audiences of science advice occurring in practice, a single strategy or set of ex ante criteria may not be the best way to approach this difficult puzzle. This paper offers a mapping of several distinct types of manifestations of the new demarcation problem arising in environmental and health policymaking over the last fifty years and notes their highly divergent features with respect to assessing the illegitimacy of the values in scientific work.

Science, politics and institutional design in regulation.

The politicization of science is a recurring phenomenon in US federal policymaking that is explained in part by the unstructured, collaborative nature of decision-making in most science-intensive US regulatory programs. In this chapter we spotlight some of the most significant worries arising from this longstanding approach to U.S.

Legal obstacles to toxic chemical research.

Legislative design impedes study of chemicals in the environment.

The Intersectionality of Leadership and Service-Learning: A 21st-Century Perspective.

This chapter provides a theoretical orientation to the intersections of the theory and practice of leadership and service-learning. It articulates a set of values to guide leadership educators in their service-learning practice. The authors advocate a critical approach that fosters social justice.

Connecting to Communities: Powerful Pedagogies for Leading for Social Change.

This chapter explores the use of powerful pedagogies such as service-learning, cultural immersion, and community-based research to enhance leadership development. Four key principles are presented that describe how leadership educators can facilitate community-based learning in a way that creates an optimal learning environment for students, while also engaging ethically with individuals and organizations in the community.

The perils of relying on interested parties to evaluate scientific quality.

Recently, there has been a trend in both civil litigation and regulatory law to circumvent the scientific community's collective judgment on the quality of individual studies with an adversarial process of evaluating scientific quality using interest groups. The Supreme Court's Daubert v Merrell Dow Pharmaceuticals, Inc opinion and two recent "good science" laws passed by Congress adopt an adversarial process informed by affected parties for reviewing and screening scientific quality. These developments are unwise.

Commons ignorance: the failure of environmental law to produce needed information on health and the environment.

One of the most significant problems facing environmental law is the dearth of scientific information available to assess the impact of industrial activities on public health and the environment. After documenting the significant gaps in existing information, this Article argues that existing laws both exacerbate and perpetuate this problem. By failing to require actors to assess the potential harm from their activities, and by penalizing them with additional regulation when they do, existing laws fail to counteract actors' natural inclination to remain silent about the harms that they might be causing.