Rare diseases, while individually rare, are common when considered collectively, affecting about one in 17 people across their lifetime. However, there is a lack of awareness of and education about rare diseases in nursing. To address this, the Global Nursing Network Rare Diseases (GNNRD) has been launched to connect nurses from within all fields of practice and at all levels of experience, with the aim of improving the lives of people with rare and undiagnosed diseases (RUDs). The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their families at regional, national and international levels. This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD.

There have been tremendous strides over the past decade to institute strong policy as means to facilitate alignment on goals and strategies for global neurosurgical systems strengthening. In this chapter, we highlight key historic policy milestones in the global neurosurgery movement. We discuss the role of international organizations in neurosurgery, and the incorporation of neurosurgery into global health agendas. We then delve into specific examples of policies that have been established (such as comprehensive recommendations for neurotrauma, spina bifida, and hydrocephalus), highlight the role of international organizations in shaping neurosurgical policies, emphasize the importance of advocacy, and explore future directions.

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During the COVID-19 pandemic, many advocacy groups and individuals criticized governments on social media for doing either too much or too little to mitigate the pandemic. In this article, we review advocacy for COVID-19 elimination or \"zero-covid\" on the social media platform X (Twitter). We present a thematic analysis of tweets by 20 influential co-signatories of the World Health Network letter on ten themes, covering six topics of science and mitigation (zero-covid, epidemiological data on variants, long-term post-acute sequelae (Long COVID), vaccines, schools and children, views on monkeypox/Mpox) and four advocacy methods (personal advice and promoting remedies, use of anecdotes, criticism of other scientists, and of authorities). The advocacy, although timely and informative, often appealed to emotions and values using anecdotes and strong criticism of authorities and other scientists. Many tweets received hundreds or thousands of likes. Risks were emphasized about children\'s vulnerability, Long COVID, variant severity, and Mpox, and via comparisons with human immunodeficiency viruses (HIV). Far-reaching policies and promotion of remedies were advocated without systematic evidence review, or sometimes, core field expertise. We identified potential conflicts of interest connected to private companies. Our study documents a need for public health debates to be less polarizing and judgmental, and more factual. In order to protect public trust in science during a crisis, we suggest the development of mechanisms to ensure ethical guidelines for engagement in \"science-based\" advocacy, and consideration of cost-benefit analysis of recommendations for public health decision-making.

UNASSIGNED: The guiding documents of the social work profession establish social justice as central to the discipline and practice of social work, yet there is little consensus on the meaning of the term. Therefore, the goal of this study was to examine how faculty and staff in one school of social work defined social justice.
UNASSIGNED: Data for this study were drawn from a school climate survey distributed within one school of social work with an explicitly stated commitment to social justice. Ninety-three staves and faculty responded to the open-ended question: How do you define social justice?
UNASSIGNED: Three themes were identified in how participants defined social justice as a form of evidence-based meaning making: (1) equality, (2) equity, and (3) advocacy and action.
UNASSIGNED: We conclude this article by discussing implications for how social workers can incorporate a critical approach to defining social justice that extends beyond equality and equity. Specifically, we recommend that the profession work toward a common, evidenced-based understanding of social justice to effectively educate current and future social workers to dismantle systems of oppression at all levels of social work.

OBJECTIVE: This qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home.
METHODS: This study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers.
RESULTS: Eight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal.
CONCLUSIONS: Caregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services.
CONCLUSIONS: The findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.

UNASSIGNED: Multiple sclerosis is a chronic immune-mediated disease of the central nervous system affecting nearly 3 million people worldwide. Although much progress has been made in the understanding and treatment of MS, cures remain elusive.
UNASSIGNED: To accelerate the development of cures for MS by updating the Pathways to Cures Research Roadmap based on a contemporary understanding of disease. The refined Roadmap will help to promote research in scientific areas with great potential to reveal insights leading to cures and inspire greater coordination of global resources.
UNASSIGNED: Refinements to the Roadmap were achieved during a Global Summit that included close to 200 academic and industry scientists, health care providers, policy makers, funders, and people with MS from 15 countries.
UNASSIGNED: The refined Roadmap describes three pathways that target opportunities for generating scientific insights leading to cures. Recommendations for accelerating research progress include, lowering barriers for global data sharing, enhancing collaboration and coordination among research supporters, committing to sustained funding, considering implications for implementation, engaging PwMS and committing to diversity, equity, and inclusion in the global MS movement.
UNASSIGNED: The refined roadmap provides a strategic framework for tackling the complexities of MS and advancing prevention strategies, effective treatments, and cures.

Public health nursing frequently finds itself at the nexus of community and politics. It is a precarious position, one that demands a keen understanding of how decisions made in the halls of power impact the most vulnerable among us. From gutting Medicaid and TANF to eroding protections for LGBTQ individuals and female-headed households, Project 2025 is an affront to public health nursing\'s moral foundation and professional ethos. This personal reflection challenges nurses to embrace their role as advocates for a more just and equitable society.

BACKGROUND: Overdose prevention sites (OPS) are a harm reduction strategy that offer people who use drugs a variety of resources including but not limited to sterile supplies, linkage to healthcare resources, and intervention if an overdose occurs. OPS operate in over 120 countries and evidence has demonstrated they are an effective harm reduction strategy. Despite their success elsewhere, OPS remain federally illegal in the United States and thus there is limited research on their implementation and outcomes in the United States. This study aimed to identify Colorado healthcare providers\' knowledge and attitudes about OPS and determine if there is a correlation between healthcare providers with more knowledge about OPS having a more positive attitude about OPS.
METHODS: An electronic survey was distributed to healthcare providers in Colorado. Responses were collected in early 2022 and recorded on a 5-point Likert scale. Mean scores between 1 and 5 were calculated for each participant and analysis of variance methods were used to determine correlating demographic factors. A p value of ≤ 0.05 was used to determine statistical significance of all findings.
RESULTS: This study included 698 participants. A Pearson correlation analysis revealed a strong positive relationship (r = 0.76, p < 0.0001) between provider knowledge and attitudes about OPS. Emergency medicine providers scored the highest in mean knowledge and attitude scores in comparison to all other specialties. Respondents affiliated with a harm reduction center exhibited the highest mean knowledge and attitude scores. Mean knowledge and attitude scores generally rose with respondents\' increasing encounters with people who inject drugs in a typical workday, except when reaching nine or more encounters, where a sharp decline occurred.
CONCLUSIONS: Our study highlights the importance of education, exposure to harm reduction strategies, and inter-specialty collaboration in shaping healthcare providers\' knowledge and attitudes about OPS. The positive correlation between providers\' knowledge and attitudes about OPS suggests that educating healthcare providers on harm reduction strategies, specifically OPS, may lead to reduced stigmatization of OPS among healthcare professionals.

Advocacy in breast cancer has a history going back eight decades, influencing funding for research, giving women a voice in their treatment, and helping destigmatise the disease and its management. We aim to outline this trajectory. This is a retrospective historical narrative. We have identified a number of prominent women diagnosed with breast cancer who have had significant political influence and describe the grassroots movement of patient advocacy groups who now have a seat at the policy table and are integral to the research agenda. We also report on how as surgeons we can advocate for better treatments and care pathways, and importantly help build the evidence-base to inform better practice and policy. Surgical advocacy and consumer advocacy have led to huge improvements in management and outcomes for those affected by breast cancer.