Umbrella Organization Research Articles

Glaciers are for girls: the inaugural expedition of Girls on Ice Austria succeeded in empowering nine young women in August 2021

Abstract. Girls on Ice Austria, an organization that encourages young women to stretch themselves through wilderness and glacier travel, camping, science and art, successfully completed their inaugural expedition in August 2021. Nine girls from Austria, Germany and Italy joined science instructors specializing in glaciology and meteorology, two professional artists (an actress and a painter), and a professional mountain guide for an all-female, week-long expedition to Bachfallferner glacier in the Ötztal. The team learned basic mountaineering and climbing skills, conducted scientific experiments including measuring the daily melt rate of Bachfallferner glacier, and pushed their creative boundaries. The all-female nature of Girls on Ice, and Inspiring Girls Expeditions (the umbrella organization) is meant to show young girls that women are capable of successfully filling traditionally male roles (such as in glaciology and mountaineering), to introduce the next generation of girls to the world of mountains and glaciers, and to encourage them to bravely and confidently pursue these career paths.

Historical Background of Pediatric Kidney and Liver Transplantation in Turkey

The cornerstone events of kidney and liver transplant history in Turkey are summarized herein. In 1975, we performed the first pediatric living-related renal transplant in Turkey. We followed this in 1978 with the first deceased donor kidney transplant, using an organ supplied by Eurotransplant. In 1979 the law on harvesting, storage, grafting, and transplant of organs and tissues was enacted; the first local deceased donor kidney transplant was performed by our team in 1979. In 1988, another ground-breaking event in Turkey, the Middle East, and North Africa was successfully achieved: the first successful deceased-donor liver transplant, and in 1990, the first pediatric living-related segmental liver transplant in Turkey, the region and Europe was performed by our team. One month later, an adult-to-adult living-related liver transplant (left lobe) in the World was successfully performed. On May 16, 1992, we performed the first combined liver-kidney transplant from a living-related donor, which was the first operation of its kind in the World. Between November 1975 and January 2022, we have performed 3288 kidney (380 pediatric) at the Hacettepe University Hospitals and later on at Baskent University; since 1988, 701 (334 pediatric) liver transplants have been performed. In over 40 years of kidney and liver transplants history in Turkey, 46876 kidney (2502 pediatric patients) and 18203 liver (2612 pediatric patients) transplants have been performed nationwide. In 2001, the Ministry of Health established the National Coordination Center as an umbrella organization to promote transplant activities, especially for deceased donor organ procurement. Transplant activities are accelerating daily throughout the country, but deceased donors are still far below the desired rates.

Transplantation in Turkey and region

The article provides insight into significant milestones in the history of organ transplantation in Turkey and region.
 In 1975, we were the first in Turkey to perform living‑related kidney transplantation and, in 1978, deceased‑donor kidney transplantation, using an organ supplied by Eurotransplant. In 1979, the law on harvesting, storage, grafting, and transplantation of organs and tissues was enacted. The first local deceased‑donor kidney transplantation was performed by our team in 1979. The first successful deceased‑donor liver transplantation, which was a groundbreaking surgery procedure for Turkey, the Middle East and Northern Africa, was carried out by our team in 1988. In 1990, we were the first not only in Turkey but also in the Middle East region as well as Europe to perform pediatric living‑related segmental liver transplantation. One month later, an adult‑to‑adult living‑related liver transplant (a left lobe) was successfully performed for the first time in the history of organ transplantation. On May 16, 1992, we carried out the first combined liver‑kidney transplantation from a living‑related donor, which was the first operation of its kind in the world. Between November 1975 and October 2021, we performed 3,256 kidney transplantations at Hacettepe University Hospitals . Since 1988 to date, we have carried out 695 liver transplantations at Baskent University. According to the registry of the Ministry of Health, from 2002 to 2021, 46,115 kidney transplants were performed nationwide, as compared with 17,868 liver transplants, 1,153 heart transplants and 198 pancreas transplants. In 2001, the Ministry of Health established the National Coordination Center as an umbrella organization to promote transplantation activities, especially deceased‑donor organ procurement. Despite constantly increasing overall living‑donor transplant rate across the country, overall deceased‑donor transplant rate is still far below the desired level.

Horizontal supply chain collaboration amongst small enterprises: insights from UK brewery networks

Collaborating with rival firms is counterintuitive but can lead to mutual benefits if implemented successfully. This research paper investigates how horizontal collaboration amongst small businesses can support supply chain activities and lead to network enhancement. A cross-case analysis of five umbrella organisations, each consisting of multiple breweries, was performed. Their collaborative activities were investigated through semi-structured interviews, site visits, and documentation in this exploratory, qualitative study. The findings contribute to the development of a conceptual framework that shows the linkages between group formation, collaborative activities, and supply chain outcomes. Horizontal initiatives are dependent on the formation of a unifying umbrella organisation and the management resources required to form and sustain the group should not be underestimated. The comparison across five networks included in the study suggests that social mechanisms can lead to network development. However, the relationship between the umbrella organisation and its members needs to be formalised to ensure sustainable operations and the delivery of expected outputs.

Experiences and Perspectives of Marketing Authorisation Holders towards Medication Safety Monitoring during Pregnancy: A Pan-European Qualitative Analysis.

Although marketing authorisation holders (MAHs) are involved in monitoring medication safety, it was unclear how they experience their role and current monitoring activities in pregnancy. Therefore, a qualitative study using online focus groups with MAHs and the Belgian umbrella organisation of MAHs was conducted in June–July 2021. In total, 38 representatives of nine organisations participated. Overall, participants reported multiple difficulties with data collection, including underreporting, collection of incomplete information, and loss to follow-up. The limited number of high-quality data collected, the unknown denominator and the lack of comparator data complicate MAHs’ data processing activities, preventing them to timely provide evidence in the pregnancy label. Three ‘conflicts’ inherent to the specific position of MAHs were identified explaining the difficulties they experience, i.e., (1) mistrust from patients and healthcare professionals (HCPs); (2) MAHs’ legal obligations and regulatory framework; (3) MAHs’ position outside the healthcare context. To overcome these barriers, MAHs suggested that data registration should occur in close collaboration with patients and HCPs, organised within the healthcare context and performed by using a user-friendly system. In conclusion, the reported difficulties and underlying conflicts of MAHs highlight the need for more effective, collaborative data collection strategies to generate new evidence on this topic.

What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities

Compared with chronic diseases affecting larger populations, rare disease (RD) patients experience great inequities in diagnosis, care, and research. Within RDs, health disparities compound these inequities, as marginalized communities experience additional barriers in accessing clinical care and are often underrepresented from participation in research and clinical trials. For almost 40 years, the National Organization for Rare Disorders (NORD), a RD umbrella organization with over 300 nonprofit organizational members, has led efforts to understand and address inequities for the RD community through innovative research, programming, and collaboration with patients, caregivers, practitioners, and external stakeholders. The beginning of the COVID-19 pandemic in 2020 brought to light longstanding disparities and discrimination for marginalized communities as well as pivotal racial justice movements. These events spurred many RD nonprofit organizations’ interest in increasing outreach and engagement with minoritized communities within RDs and diversifying their organization internally. Building on the increased interest in diversity, equity, and inclusion (DEI), NORD has focused on collecting case studies from within NORD and its member organizations to capture current efforts to improve DEI within the RD ecosystem. One way clinicians can work to mitigate the effects of disparities is to collaborate with RD patient organizations; this article provides a means by which clinicians and researchers can understand some of the challenges RD nonprofit organizations face in bridging disparities and learn about solutions to supporting marginalized patients within their communities. Clinicians are encouraged to join NORD in our policy efforts advocating to ensure patient access to health care providers practicing in a different state vis-à-vis telehealth.

COVID 19 Pandemic and the Reaction of the Supreme Audit Institutions. Lessons Learned at the End of the Pandemic

Abstract The article aims to analyze the reaction of the supreme audit institutions during the two years in which the COVID 19 pandemic affected all the states of the world, given the particularly important role that these institutions play in terms of their specific external public audit activity of public resources. At the same time, this paper aims to analyze the main lessons learned by INTOSAI, as the umbrella organization of the supreme audit institutions, as well as by the other SAIs individually, at the end of the pandemic, as a unique experience in the last century.

A Queerly Joyful Noise: Choral Musicking for Social JusticeFocus: Choral Music in Global Perspective

A Queerly Joyful Noise: Choral Musicking for Social JusticeFocus: Choral Music in Global Perspective

Controlling civic engagement of youth spanish muslims

This paper focuses on Muslim Civil Society structures and, more specifically, on the gap between the organizations from the first (migrant) generation and the new grammars of action of new generations of Spanish Muslims. The originality of this article lies in its power to address three fundamental questions: (1) Are the umbrella organizations silencing the demands of Muslim youth?; (2) How do Muslim youth resist such representative hegemony? and; (3) What specific strategies are Muslim women currently developing to gain representation and involvement in mainstream Spanish society? We find evidence for new grammars of action defying traditional authorities and reject decontextualized, asynchronous Islam. Young women are engaging in broader and inclusive activism, inspired by religion affiliation in order to reinforce their external solidarity and engagement in mainstream political structures. By contrast, young men are calling for a new Muslim leadership to reinforce primary solidarity and concentrate more on earning religious rights. For women, religion is a vector to participation and for men, it is a form of participation.

International Solidarity as the Cornerstone of the Hungarian Post-War Socialist Women's Rights Agenda in the Magazine Asszonyok

AbstractThis article analyses five years of the magazine Asszonyok (Women) the main forum for discussing women's rights between 1945 and 1949 in Hungary. The magazine was published by the Magyar Nők Demokratikus Szövetsége (the Hungarian Women's Democratic Federation), an umbrella organization created mostly by women from the communist movement. This analysis is centred around the idea of internationalism and how it became a means for socialist women's emancipation, proof of the political power of the new women's organization, and a platform of political education. It also symbolized the new era of peace after the war, peace becoming one of the slogans of the socialist women's movement globally. The broadening international platform of transfers became a terrain where political languages about race, class, and gender were slowly but steadily taking shape. Solidarity with women across the globe became one of the main tenets of communist women in Hungary. However, solidarity had its limits. As is shown here, identification with the right political agenda was even more important than aspects of race and class. This was one of the most important ways in which socialist women's rights and feminism were diverging from each other, despite the broad spectrum of shared elements on their agenda.

Physicians and Society: On the Change in the Occupational Profile of Physicians in the Mid-19th Century, a Socio-Medical Concept by Salomon Neumann

The medical profession is not a trade, it is by its nature a free profession (Federal Doctors' Ordinance). The medical practice as an institution and the medical profession are, however, subject to current social conditions, currently particularly shaped by the rules of health economics and digitization. Salomon Neumann, who, along with Rudolf Virchow, is considered the founder of social medicine in Germany, published the vision of liberating academically trained doctors from the trade regulations applicable to craftsmen and other professions in 1847. On the basis of law and reason that applies to public action, he conceived the establishment of an association, a new professional representation of the previously isolated doctors in freedom, solidarity and self-administration. The failure of the bourgeois revolution in 1849 with subsequent social restoration delayed innovative developments. The professionalization of the medical profession begins with the formation of a unified medical status in 1852, the formation of medical associations in the 1860s, the establishment of the German Association of Physicians in 1872 as an umbrella organization and the establishment of state medical associations in 1948 as public corporations.

A Kurdish al-Qaida? Making Sense of the Ansar al-Islam Movement in Iraqi Kurdistan in the Early 2000s

Initially construed as the vital link between Saddam Husayn’s Iraq and al-Qaida in the runup to the Iraq war, the Ansar al-Islam (AI) group formed in Iraqi Kurdistan in December 2001 has been the subject of intense debate and huge media coverage. In academic research, however, its history, evolution and affiliation have received surprisingly little academic scrutiny. Commonly depicted as an al-Qaida affiliated group or a sub-group controlled by al-Qaida’s emerging organization in Iraq (AQI), the AI group should—this article argues—instead be understood as a strong independent-minded group with an ideology and operational pattern distinct from that of AQI. Although sharing many commonalities, the AI and AQI became de facto rivals, not allies. Contrary to accepted wisdom, the AI and its first successor group remained a distinct Salafi-jihadi insurgent group largely focused on fighting ‘the near enemy’, i.e., Kurdish and Iraqi authorities. It strongly resisted repeated calls for joining al-Qaida’s new umbrella organization in Iraq, the Islamic State of Iraq (ISI) in 2006, and it paid no homage to AQI’s or ISI’s leaders. Also on the international level, the groups were fundamentally different. As opposed to al-Qaida’s terrorist plotting abroad, the AI’s international network were hierarchical structures, geared towards raising logistical and financial support as well as recruitment. The article highlights the need for greater attention to the complexities and nuances in patterns of contacts and cooperation between militant Islamist extremists. Informed by the growing scholarship on the multifaceted nature of contemporary jihadism, its numerous manifestations in local settings, and its strong internal rifts, this paper seeks to redress the early reductionist portrayal of the AI movement.

The Role of Farmers’ Umbrella Organizations in Building Transformative Capacity around Grassroots Innovations in Rural Agri-Food Systems in Guatemala

Family farmers and grassroots innovations can enable transitions to more sustainable food systems. The study explores the roles umbrella farmers’ organizations play in building transformative capacity through grassroots innovations in rural food systems in Guatemala. An analytical framework based on the notion of transformative capacity and socio-technical transitions is used to explore the specific factors enabling and limiting the transformative potential of grassroots innovations in a rural setting. A case study in rural Huehuetenango, Guatemala is presented, using interviews and focus groups discussions with relevant stakeholders engaged in the development process. Perceptions from interviews and focus groups discussions highlight the catalyst role played by the umbrella farmers’ organization as the main enabling factor to increase transformative capacity of grassroots innovations. The umbrella organization plays a key role in enabling farmers to pursue socio-technical transformations and in moving grassroots innovations outside a niche sphere. It contributes to creating coherence towards a common sustainability vision, supporting innovation and experimentation, and providing technical assistance around core development processes. In addition, it navigates across different levels of agency (households, communities, networks, and institutions) and different interaction scales (local, department, and national). However, gender and multi-generational gaps have been identified as limiting factors that would require further analysis.

Pancreatic Cancer From the Patient Perspective: The Time to Act is Now.

Pancreatic cancer is a disease requiring urgent attention from governments and policymakers. Recently, a state of emergency has been declared for this cancer—being the fourth most common cause of cancer deaths in the European Union, it has the lowest survival rate of all common cancers. One of the major reasons pancreatic cancer is associated with such poor outcomes is because it is usually diagnosed at a late stage. Also, investment in research for effective targeted therapies is lacking. This is the perspective of a white paper developed by Digestive Cancers Europe, an umbrella organisation representing European patient organisations. It has been developed after consultation with pancreatic cancer patients, representatives of cancer patient organisations and leading pancreatic cancer healthcare professionals. The purpose of the paper is to highlight the key urgent unmet needs in pancreatic cancer from the patient perspective, ultimately with a view to improve patient care and outcomes in this very challenging disease.

Joint Research and Collaboration between Grant-making Foundation, Nonprofit Umbrella Organization, and Researcher: Case Study from Fukutake Education and Culture Foundation’s Questionnaire Survey

Joint Research and Collaboration between Grant-making Foundation, Nonprofit Umbrella Organization, and Researcher: Case Study from Fukutake Education and Culture Foundation’s Questionnaire Survey

COMMUNISM- AN INCOMPLETE, YET UNFORGETTABLE TALE: A CASE STUDY OF PAKISTAN

The origins of socialism and left-wing ideology in Pakistan can be traced back to the Russian revolution in the early 1900s. In the early twentieth century, the peasants of the Punjab and Sindh, sub-continent’s two regions began openly rising against British Empire, while labor unions and strikes popped up in these regions. During the 1930s and early 1940s, the CPI and communism faced numerous challenges. CPI' quickly gained both momentum popularity in the subcontinent posed a severe danger to imperialists, prompting its prohibition in 1934. This restriction, however, had no effect on communism's expanding influence, since communism continued to work under other umbrella organizations. The bourgeois controlled the state in Pakistan at this time, but the proletariat tried to controll the country as a whole. Peasants, workers, and students were all united in their opposition to the regime, while leftists slept soundly, dreaming of the two-stage theory and the democratic revolution that the progressive bourgeois was supposed to bring about.

BUILDING BRIDGES: HARNESSING A CRITICAL LEADERSHIP SKILL FOR A DIVERSE WORLD

AbstractThe author, who is a bi‐racial woman with a father from India, and a mother from Mississippi, describes her work as Founder and Chief Change Agent of Flying Elephant, an umbrella organization for four social ventures. By observing her parents when she was growing up, “I learned how to build bridges myself, even in the most extreme situations.” She discusses a diversity, equity, and inclusion/DEI framework that she uses with top executives of various organizations. She explains that “the first step in the bridge‐building process is for the organization to lay a foundation for its DEI goals.” These address “three organizational layers: people, practices, and operations.” Rather than explain each of the further layers in this framework, the article focuses on “your starting point as an individual.” Further explanation is provided under the following headings, which in her words are: Learn how to identify your unique position, Pinpoint privileges that society affords your identities, Recognize how your background changes your perspective, Appreciate how the social experience of others influences them, and Develop strategies for elevating others for the benefit of all. You will be “fully celebrating identity and taking concrete steps as a leader to make the world around you more equitable.”

Those Who Pay the Piper Calls the Tune: Meta-Organisation and Capacities of the Third Sector in Migration Policies

In this paper, we examine the changing landscape of migration policy work conducted by civil society organisations (CSOs) in the Czech Republic. We focus on how funding opportunities affect CSOs’ policy work, long-term planning and everyday practices. Through a qualitative analysis of 15 interviews with representatives of non-governmental organisations and 11 interviews with policy stakeholders, we explored the critical and reflexive strategies adopted by CSOs. A crucial role in developing critical capacity seems to stem from umbrella organisations—organisations whose members are organisations. With respect to CSOs’ strong dependency on the state, umbrella organisations might serve as shields protecting individual organisations from direct conflicts with governmental policies and institutions. In the end, we assume that meta-organisations potentially function as important vehicles for the reflexive development and evolution of organisations and decrease transaction costs for the organisation field.

AEGIS, the Virtual European Genebank: Why It Is Such a Good Idea, Why It Is Not Working and How It Could Be Improved.

Europe is very active in terms of conserving plant genetic resources, with hundreds of genebanks and thousands of dedicated people involved. However, the resulting infrastructure is, along with being very expensive, far from efficient and not very reliable. In this opinion paper, the authors describe how this situation arose, and why the European Cooperative Programme for Plant Genetic Resources (ECPGR), the collaborative umbrella organization of the European countries involved, has not been able to improve this situation so far significantly. The principles of the decentralized virtual genebank (AEGIS) are described, and an analysis is made of the reasons for its lack of success. Possible changes for making AEGIS a success, or at least steps in the right direction, are proposed. These changes center around the creation of a system of certified genebanks with proper quality management, guaranteeing the long-term conservation of, and immediate access to the plant genetic resources conserved in it.

The joint roadmap for radiation protection research: outreach and future

During the last decade there has been remarkable integration of radiation protection research in Europe, driven by six research platforms. The platforms are associations of research centres, university research groups and funding bodies in Member States that are dedicated to specialised areas of research in radiation protection, such as health risks (MELODI), radioecology (ALLIANCE), radiological emergencies (NERIS), dosimetry (EURADOS), medical use of radiation (EURAMED) and societal aspects (SHARE). Recently these platforms established an umbrella organisation MEENAS, to endorse further integration and joint activities in research, education and training, and infrastructures. A milestone in this process of integration and priority setting was achieved in 2020 when the first edition of the joint roadmap for radiation protection research was finalised. In this paper we describe the various roles for research and development in the radiation protection context, ranging from basic scientific knowledge underpinning the system of protection to research supporting the development and application of international standards and research and development activities needed to ensure safety in radiation practices and in potential exposure scenarios. We describe the process of how the joint roadmap has been developed and how it could be implemented. Finally, we address the need to anticipate potential future exposure scenarios and to systematically consider the impact of emerging technologies and global challenges in the context of radiation protection. The joint roadmap is a living document that needs to be regularly updated to cover both current and potential exposures of humans and the environment.