Success Story Research Articles

Success stories: exploring perceptions of former fellows of a global faculty development program for health professions educators

BackgroundFaculty development programs (FDPs) in health professions education (HPE) are instrumental in supporting, promoting, and improving HPE curricula and activities that target individual- and system-level capacity strengthening. FAIMER, a division of Intealth, has been offering FDPs for global health professions educators in HPE and leadership for over two decades through the International FAIMER Institute in the USA and FAIMER Regional Institutes located globally. This paper explores perceptions of former program participants (Fellows) of FAIMER global FDPs by eliciting their success stories.MethodsThe study utilized a modified Success Case Method approach. Study participants recruited were 14 FAIMER Fellows nominated as exemplars of success cases by program directors and faculty members from seven global sites, using extreme case sampling technique. Of the 14 Fellows, two were from Africa, nine from Asia and three from Latin America. In-depth interviews were conducted with each Fellow to understand their self-perceived success, and factors from both their local context and FAIMER’s FDPs that have contributed to their success. Theoretical thematic analysis method was used to analyze the data.ResultsThe top three areas of success perceived by Fellows were career advancement & recognition, professional development, and advancement of HPE. Fellows identified both institutional-level factors and personal attributes as contributing to their success. They also reported that FAIMER global FDPs have substantially contributed to their success by expanding professional networks, fostering academic achievement, and enhancing interpersonal development and leadership skills.ConclusionsThe findings show that Fellows perceive that there are multiple pathways for them to succeed in advancing the field of HPE. The Fellows’ stories highlight the continuing value of FAIMER global FDPs for HPE educators worldwide in professional development and leadership. The study also proposes recommendations for enhancing faculty development activities in HPE.

Needs Analysis of Virtual Reality Implementation in Indonesian Medical Curricula: A Qualitative Study

Virtual reality (VR) is an immersive technology that can be a learning tool for medical students. However, VR devices are costly and need high maintenance. In addition, prior research rarely integrates VR into medical education’s pedagogical and learning aspects. Questionnaires and guidelines for implementing VR are also scarce. This study analysed the need for VR implementation in medical curricula in Indonesia using qualitative descriptive methods. A non-discriminative snowball sampling technique was used, and in-depth semi-structured interviews were conducted for data collection. Data analysis was carried out using thematic analysis. This study included nine respondents from five medical schools (three state and two private). The results show that the VR implementation process must consist of several stages: needs exploration, blueprint creation, multidiscipline or multi-centre collaboration, training provision, success stories and scientific evidence, appreciation, and evaluation. Readiness factors assessed during the needs exploration stage include human resources, curriculum, infrastructure, funding, and regulations. In conclusion, VR implementation in Indonesian medical curricula must be carried out in seven steps, and five essential readiness factors must be extensively explored to ensure that the implementation is successful, has educational value, and has further potential development in the future.

Translational Research and Therapies for Neuroprotection and Regeneration of the Optic Nerve and Retina: A Narrative Review

Most retinal and optic nerve diseases pose significant threats to vision, primarily due to irreversible retinal neuronal cell death, a permanent change, which is a critical factor in their pathogenesis. Conditions such as glaucoma, retinitis pigmentosa, diabetic retinopathy, and age-related macular degeneration are the top four leading causes of blindness among the elderly in Japan. While standard treatments—including reduction in intraocular pressure, anti-vascular endothelial growth factor therapies, and retinal photocoagulation—can partially delay disease progression, their therapeutic effects remain limited. To address these shortcomings, a range of neuroprotective and regenerative therapies, aimed at preventing retinal neuronal cell loss, have been extensively studied and increasingly integrated into clinical practice over the last two decades. Several of these neuroprotective therapies have achieved on-label usage worldwide. This narrative review introduces several neuroprotective and regenerative therapies for retinal and optic nerve diseases that have been successfully translated into clinical practice, providing foundational knowledge and success stories that serve as valuable references for researchers in the field.

Women’s Cooperatives in Turkey: Challenges, Success Stories, and Policy Recommendations

Women’s Cooperatives in Turkey: Challenges, Success Stories, and Policy Recommendations

Syrian Youth with Disabilities Accessing Higher Education in Turkey: Routes and Barriers

ABSTRACT This research elaborates the nexus of disability-migration-education through a multidisciplinary investigation of intersectional barriers faced by Syrian youth with disabilities during their access to, and study at higher education (HE) institutions in Turkey. HE inclusivity for Syrian students with disabilities (SSD) is analysed in terms of the main administrative, societal, and structural barriers. The methodological design of this study applies a human rights-based approach to education, migration and disability in company with participatory action research methodology. Findings are based on data collected through semi-structured interviews, participant observations, institutional visits, and multi-stakeholder workshops addressing disability and migration-based experiences of SSD in 2018 and 2019 in Istanbul, Şanlıurfa and Gaziantep. Information and experiences are collected from SSD, NGOs in the field of migration and disability, governmental bodies, and HE institutions. Our findings showed that various legal, administrative and cultural barriers, and structural inequalities make access to HE more difficult for refugees with disabilities. Despite these, SSD have success stories in accessing HE as a result of their hard work and courage. This study provides first-hand bottom-up intersectional research about the situation of SSD in Turkey, host to the largest refugee population in the world.

An Up-to-Date Review of Materials Science Advances in Bone Grafting for Oral and Maxillofacial Pathology.

Bone grafting in oral and maxillofacial surgery has evolved significantly due to developments in materials science, offering innovative alternatives for the repair of bone defects. A few grafts are currently used in clinical settings, including autografts, xenografts, and allografts. However, despite their benefits, they have some challenges, such as limited availability, the possibility of disease transmission, and lack of personalization for the defect. Synthetic bone grafts have gained attention since they have the potential to overcome these limitations. Moreover, new technologies like nanotechnology, 3D printing, and 3D bioprinting have allowed the incorporation of molecules or substances within grafts to aid in bone repair. The addition of different moieties, such as growth factors, stem cells, and nanomaterials, has been reported to help mimic the natural bone healing process more closely, promoting faster and more complete regeneration. In this regard, this review explores the currently available bone grafts, the possibility of incorporating substances and molecules into their composition to accelerate and improve bone regeneration, and advanced graft manufacturing techniques. Furthermore, the presented current clinical applications and success stories for novel bone grafts emphasize the future potential of synthetic grafts and biomaterial innovations in improving patient outcomes in oral and maxillofacial surgery.

Open government through public complaint management: Success stories from the Jakarta Provincial government

The relationship between open government and public complaints is closely related to transparency, accountability, and public participation in government. The following are some relationships between the two: Transparency in open government aims to increase transparency in providing public information, including information related to public complaints. It allows the public to access information related to public services and the complaints process. Public participation in open government encourages active public participation in the decision-making process. With an open and transparent public complaints mechanism, the public can participate by providing input, submitting complaints, or providing suggestions for improving public services. Accountability in open government emphasizes government accountability to the public. By integrating the public complaint system within the open government framework, the government can more easily be held accountable for handling and following up on complaints. In terms of service innovation and improvement, the government can identify possible problems in public services and take steps to improve the efficiency, quality, and responsiveness of these services by collecting data and information from public complaints. Thus, open government and public complaints support each other to create an environment that is more transparent, participatory, accountable, and responsive to public needs.

Feasibility Study of Marigold as Intercrop in Drumstick Cultivation for Interim Income Generation

Drumstick (Moringa oliefera Lam.) PKM-1(Annual) is an important perennial vegetable crop present cultivating in India not only as vegetable and for moringa leaf powder. India is the main producer of drumstick in the world because higher contribution is due to favourable temperature during flowering and fruit development stages. Even though encountered several production hurdles resulting greater yield loss due to existing climatic conditions during fruit developmental stages. But this crop gave them perfect assurance in giving good income in an average about 2-3 Lakhs rupees over a period of 2 years. Based on weather conditions farmers were being come forwarded by training programmes conducted by our KVK from 2017-till date, we have documented the farmers results by growing intercrops mainly marigold crop. Which gives good yield and good income to the farmers before pod formation of drumstick. Marigold is 110 days crop where drumstick gives first yield after 7 months. In between marigold crop not only giving accountable benefits to the farmers and it reduces the nematode problems in the field as well explained by Steiner, 1941 Marigold (Tagetes erecta) is one of the most widely studied plant genera due to its allelopathic potential against PPNs. Marigolds’ repressive impact on nematodes has been documented for over 50 years and some studies said that spiral (Helicotylenchus multicinctus) nematodes are responsible for yield losses of 30–60% in many banana-producing countries in the tropics (Davide, 1995, Speijer and Kajumba, 1996, Kashaija et al., 2004) . The partner crops of the intercropping system share space, water, and nutrients making the most efficient utilization of available resources (Xu et al., 2020). Earlier farmers were paddy growers where they didn’t see profits by selling paddy in IKP centers or as individual sales. So We conducted trails in Huzurabad Division and Errabelli villages of Karimnagar District (Old Karimnagar District), got successful results by doubling the farmer’s income. Raised marigold seedlings in KVK during June month and supplied to the farmers. Transplanted marigold and Drumstick in July month with 60cm x60cm and Drumstick spacing was 3mx3m where 444 plants were accommodated in one acre area, Intercropping is an agricultural system that improves land use efficiency through simultaneous cultivation of more different crops in the same field using functional complementarity to increase resources utilization, increase the productivity of crops and nutrient-use efficiency (Chifflot et al., 2006; Zhan and Li, 2003) Even went through many hurdles in marigold and drumstick crops in rainy season due to paddy growing soils and water logging conditions. In this, observed positive effects on soil carbon and nitrogen of intercropping found in previous intercropping studies (Makumba et al., 2007), [1]. Results are as follows we harvested 36.80Q per acre in 8 pickings and after drumstick pods harvested from February up to June 134 pods per tree. It shows C: B ratio as drumstick (PKM1) contribution 1:11.7 and marigold (Tanindo (Yellow and Orange) contribution 1:4.3 to the farmers. The demonstration plots reported that yield of marigold and drumsticks are 38.6Q and 49.58Q per acre. Farmers got good income Rs. 2, 74,160.00 through two crops in one acre area with Marigold as inter crop in Drumstick plantation. Based on this success story of the farmers, NABARD bank started giving loans to the farmers and they published this success story in their credit linkage plan 2018-19.

Evaluating contexts for implementing a competency‐based curriculum in south and eastern Africa: A meta‐narrative review

AbstractMany countries have looked at schools as spaces that can impart requisite skills for future jobs through competency‐based education (CBE). Yet, there is limited comparative research evidence showing countries' implementation progress. The research design adopted for this study is a meta‐narrative. Stufflebeam's (2000) context, input, process and product evaluation model is used to reflect on the education systems of two countries, Rwanda and Zimbabwe, and the enactment of their competency‐based curricula. Data from the literature was analysed using a combination of thematic, content and narrative approaches. The findings of the study established four epistemic areas that influenced the growth of the CBE movement—competency‐based training, progressivism, competency assessment programmes and the 21st‐century CBE movement. Further results showed that the extent of support for education, literacy levels and proficiency in the language of instruction were some of the context‐determinant factors influencing CBE implementation. Despite some success stories, challenges in the areas of assessment, teaching and ICT integration were reported. The study made two recommendations. Firstly, countries can enhance effective implementation through the provision of guiding frameworks for continuous professional development to empower teachers on the knowledge and skills for a CBE. Secondly, there is a need to re‐examine the CBE approach to country‐specific contexts to assess relevance to prevailing national needs.

Pengembangan Moocs Sukses Berbisnis di Marketplace Sebagai Peluang Bisnis Online

Marketplace is a digital platform that is familiar to use when buying and selling online. Marketplaces are crucial in enhancing the quality, marketing, and competitiveness of MSME services and products. There are so many MSMEs in the form of online stores in the marketplace. The existence of a marketplace is beneficial for business owners who are just starting their business on a particular marketplace platform. However, the existence of these online stores is considered not optimal in reaching a very broad market due to the lack of experience and knowledge to make business innovations. Therefore, a training through MOOCs is needed for MSMEs that have online stores incorporated in a marketplace. using the ADDIE Model to acquire prevalent knowledge regarding business strategies in the marketplace, xMOOCs are developed. The developed MOOCs consist of seven materials, namely (1) Basic Concepts of Marketplace, (2) Marketplace Business Models, (3) Preparation for Starting an Online Business in the Marketplace, (4) Selling in the Marketplace, (5) Strategies for Increasing Traffic in the Marketplace, (6) Managing and Developing Stores, and (7) Success Stories of Online Sellers in the Marketplace. The development of MOOCs through research obtains complete information from the design, development, to evaluation stages. These MOOCs can be used massively and effectively in providing useful knowledge for participants to increase sales in the marketplace.

Success Stories: Lessons from Thriving Entrepreneurs

All the success stories embark on a journey through the captivating narratives of accomplished business visionaries, dissecting the intricacies of their triumphs and distilling invaluable lessons for aspiring entrepreneurs. This article meticulously scrutinizes the evolution of their enterprises, uncovering the pivotal moments, challenges, and strategies that have propelled them to the zenith of success. At the heart of these captivating tales lies a testament to resilience and perseverance. Entrepreneurs, fortified by unwavering determination, navigate the labyrinthine landscape of business, confronting adversities with unwavering resolve. Fuelled by a potent blend of vision and passion, they embark on entrepreneurial quests imbued with purpose, igniting transformative change within their industries and beyond. Central to their remarkable odysseys is an ethos of relentless innovation and adaptability. Entrepreneurs adeptly navigate the currents of change, embracing disruption as an opportunity for evolution. Through audacious risk-taking and astute decision-making, they carve new pathways to prosperity, demonstrating a profound capacity to thrive amidst uncertainty. Yet, amidst the triumphs, lies a profound reservoir of wisdom gleaned from failure. Entrepreneurs, undeterred by setbacks, harness the crucible of adversity to refine their strategies and fortify their resolve. Grounded in a steadfast commitment to customer-centricity, they forge enduring connections, fostering loyalty through unparalleled value delivery and exceeding expectations. Moreover, these visionary entrepreneurs embrace a broader imperative, cognizant of their role as agents of positive change within society. Balancing ambition with an unwavering commitment to ethical stewardship, they champion causes that transcend profit margins, leveraging their platforms to effect meaningful societal impact. Keywords:Accomplished business visionaries, Triumphs, Invaluable lessons, Scrutinizes, Evolution, Pivotal moments, Challenges, Strategies, Resilience, Perseverance, Determination

Toward the confident deployment of real‐world reinforcement learning agents

AbstractIntelligent learning agents must be able to learn from experience so as to accomplish tasks that require more ability than could be initially programmed. Reinforcement learning (RL) has emerged as a potentially powerful class of solution methods to create agents that learn from trial‐and‐error interaction with the world. Despite many prominent success stories, a number of challenges often stand between the use of RL in real‐world problems. As part of the AAAI New Faculty Highlight Program, in this article, I will describe the work that my group is doing at the University of Wisconsin—Madison with the intent to remove barriers to the use of RL in practice. Specifically, I will describe recent work that aims to give practitioners confidence in learned behaviors, methods to increase the data efficiency of RL, and work on “challenge” domains that stress RL algorithms beyond current testbeds.

Control of rhizomania in sugar beet—A success story made possible by resistance breeding

AbstractThe economic success of sugar beet production depends largely on the control of various pathogens and pests. Beet necrotic yellow vein virus (BNYVV) has historically been a major threat to sugar beet growers because of the high yield losses and the fact that the virus is transmitted by a soilborne protist vector that cannot be controlled. Resistance breeding began after the disease was first described in 1959 and led to the identification of two monogenic resistance genes. Rz1 was the first resistance gene to be introduced into all varieties, enabling sugar beet production under high disease pressure. However, the widespread use of a single resistance gene resulted in high selection pressure on the virus population. As a result, resistance‐breaking of Rz1 was first reported in the early 2000s in the United States and later in many other countries. The mechanism of resistance‐breaking is based on mutations in the viral pathogenicity factor P25 and the presence of an additional RNA5 species. The second resistance gene being used in breeding is Rz2, which is based on a different resistance mechanism and is highly effective at sites where Rz1 has been overcome by the virus. In addition, Rz2 was the first rhizomania resistance gene to be cloned, and the triple gene block I of BNYVV was identified as the corresponding avirulence gene. This article highlights that resistance breeding has been key to the control of rhizomania, but history also shows that re‐emergence of the disease due to resistance‐breaking remains a permanent threat.

Aquaculture as a dysfunctional system of action; Why does fish farming stagnate in Germany?

The development of aquaculture is a story of international success, but not in the EU. The present study investigates why the development of aquaculture is stalling or sometimes even follows a downward trend in some countries, using Germany as a case study. The EU framework for aquaculture policies has established a “twin logic” as a long-term strategy: Protection of the environment and economic growth. The present sociological approach uses qualitative data from group discussions with aquaculture stakeholders from industries, politics, regulation, environmental protection agencies, and NGOs. The stakeholders indicated that a small, fragmented sector without economic and political power on the one hand, and an overregulated, complex governance on the other hand are the main barriers to economic growth. Applying Parsons’ Action Frame of Reference, the article argues that the German stakeholders are not able to adopt the EU twin logic as a clear solution for overcoming the stagnation of aquaculture in Germany in practice. For the stakeholders, the twin logic results in confusing framework conditions in terms of societal expectations, values, norms, regulations, and their national implementation. The uncertainty is rooted in diametrically societal values and leads to conflicts at the individual level of stakeholders’ decision-making for investments. In consequence, the societal environment for aquaculture investment measures is uncertain. This exploration results in an empirical-grounded hypothesis, that aquaculture is a dysfunctional system of action.

Investigating the Impact of Learning Modality Shifts on K-12 Students’ Physical Activity Participation During the COVID-19 Pandemic

The COVID-19 pandemic created many challenges for K-12 schools during the 2020-2021 school year (e.g., establishing social dis-tancing measures, decisions regarding testing protocols, and transition from in-person to distance learning). Changes in teaching and learning modalities, from in-person to remote learning options, quickly became a reality for many students [an estimated 95%, according to Engzell et al. (2021)]. With an increase in distance learning came changes in stu-dents’ structured and unstructured physical activity participation. The impact of these changes is unknown and justifies research investigating the effect modality shifts held on students’ participation in physical activity and any associated outcomes. A mixed-methods survey was administered to examine changes in K-12 students’ learning modality, 521Chiara et al.participation in physical activity, and associated outcomes. Changes in learning modality from in-person to online were most frequently in-dicated (90%). Respondents stated both challenges and success stories associated with students’ participation in physical activities resulting from modality shifts (e.g., decreased social engagements, decreased ex-posure to structured and facilitated physical education, and increased outdoor play). Positive outcomes were most prevalent in children engaging in moderate PA. However, 85% of respondents indicated a decrease in their child’s physical activity participation. Our findings justify further investigation of the immediate and long-term impact of school modality shifts on students’ engagement in physical activities.

Gene Editing for Disease Resistance in Crops: Success Stories and Challenges

Gene editing has emerged as a transformative tool in modern agriculture, offering new avenues for enhancing disease resistance in crops. By precisely modifying the DNA of plants, scientists can develop varieties that are better equipped to withstand the onslaught of pathogens, which pose significant threats to global food security. This article delves into the success stories and challenges associated with gene editing for disease resistance in crops, with a focus on technologies like CRISPR-Cas9, TALENs, and ZFNs. One of the major success stories in this field is the development of disease-resistant varieties of wheat, rice, and tomatoes. For instance, researchers have used CRISPR-Cas9 to create wheat varieties resistant to powdery mildew, a devastating fungal disease. Similarly, gene editing has enabled the development of rice strains with enhanced resistance to bacterial blight, a disease that can lead to significant yield losses. In tomatoes, gene editing has been employed to confer resistance against the Tomato Yellow Leaf Curl Virus, which severely affects tomato production worldwide. These achievements underscore the potential of gene editing to create crops that are not only more resilient but also capable of maintaining high yields under disease pressure. However, the application of gene editing in crop disease resistance is not without challenges. One of the primary concerns is the regulatory landscape, which varies significantly across different countries. While some nations have embraced gene-edited crops, others have imposed strict regulations, treating them similarly to genetically modified organisms (GMOs). This inconsistency can hinder the global deployment of disease-resistant crops and create trade barriers. Additionally, there are concerns related to off-target effects, where unintended changes in the genome may occur, potentially leading to unintended consequences in the plant's growth or ecological interactions.

What helps improve outcomes of industrial policy in developing countries? Evidence from Russia

ABSTRACT In developing countries, implementing effective industrial policies faces challenges due to capacity and governance constraints, hindering accumulation of recognised success stories. This impedes our understanding of effective industrial policy tools in countries with accountability deficits. This article explores Russia’s Industrial Development Fund (IDF) support programmes, initiated since 2014, aimed at promoting import substitution through low-interest loans to industrial firms. These IDF programmes appeared to be more effective than most of Russia’s other industrial policy instruments. The article shows that they have resulted in statistically significant sales growth for supported businesses. It highlights institutional features contributing to programme effectiveness, ensuring the integrity of beneficiary selection and project support. It offers valuable insights for organisations implementing state support programmes in challenging governance conditions. Additionally, the recent emergence of more effective industrial policy tools like the IDF may partly explain Russia’s increased economic resilience against international sanctions imposed due to the war in Ukraine.

System behaviour of water and environmental law

Rules and procedures of mechanical things might be revealed by a piece by piece, linear analysis, while large unorganised masses can be approached by means of statistics. However, there is a vast middle layer of entities with complex structure and hardly calculable non-linear procedures that offer themselves for system science. System thinking makes possible that we understand wicked problems, perfect storms and other similar phenomena that otherwise resist the old, positivist, silo-thinking. In these cases, we learn that elements of a system form structures, develop procedures through which they together produce such results that could have been unimaginable solely by the elements alone. Is it possible that with the help of system thinking we will be able to better grasp the essence of laws, moreover, we can design and implement laws with higher effectiveness? Is law a system? Or rather a complex tiered system of sub-systems, embedded into larger social-economic systems? In order to test these questions we analyse two intriguing sets of legal problems, to learn if we can describe and interpret them as systems that are – like systems generally – protecting their integrity with accommodation and resilience. The first example is the development of the segment of water laws that regulates drilling of small size wells for farms, where we see a 140 years process off gradual, more and more successful accommodation to the double social needs of protecting the interests of small farmers and sustainable development in respect to underground waters. This system resisted successfully an abrupt change that would have not fit to its goals. The second example is climate law as such – a relatively new development in the short history of modern environmental law, which can be hardly called a success story, because of the stiff resilience of the relevant branches of law. Indeed, resilience of law, as a complex, flexible and effective system does not always work according to our wishes.

Conquerors of poverty – a case study of Colombo slum dwellers

PurposeWhile extensive research has explored poverty in various dimensions, there remains a notable dearth of studies focusing on success stories of slum dwellers overcoming adversity. This research seeks to address this gap by investigating the strategies employed by individuals to transcend poverty. Moreover, it evaluates the practicality and effectiveness of existing theories in real-world contexts through careful interpretation.Design/methodology/approachData were gathered from two distinct cases through comprehensive, in-depth interviews. These narratives were subjected to scrutiny employing the Description Analysis Interpretation method. Subsequent interpretation and theoretical exploration were guided by Bourdieu’s class theory. The overarching goal was to shed light on the remarkable journeys of specific slum residents who surpassed the constraints of poverty. This endeavor not only highlighted the practical efficacy of these theories but also underscored their relevance in illuminating real-world scenarios through interpretation.FindingsThe findings underscore the capacity of slum dwellers to rise above poverty, thereby emphasizing the practical utility of specific theories aimed at poverty alleviation in elucidating their experiences. Notably, social capital, a cornerstone of Bourdieu’s class theory, emerges as equally pivotal as economic capital in shaping individuals' trajectories.Research limitations/implicationsThe study’s scope is confined to narratives within the Colombo slums, offering a platform for future researchers to extend their investigations beyond this context. By employing alternative methodologies and exploring diverse geographical regions, scholars can broaden their understanding of poverty alleviation strategies and their applicability across varied socioeconomic landscapes. This calls for wider research for comprehensive exploration and comprehension of poverty dynamics beyond singular locales.Practical implicationsThe study provides invaluable insights for policymakers, governmental bodies and nongovernmental organizations, urging them to reconsider and reformulate policies, educational strategies and community development programs tailored to the needs of slum dwellers and their children. These insights offer a pathway toward more effective interventions aimed at fostering sustainable upliftment within these marginalized communities.Originality/valueThis research fills a critical gap in poverty literature by exploring success stories of slum dwellers overcoming adversity, an area often overlooked. It uniquely investigates the strategies these individuals employ to transcend poverty, offering fresh insights into the practical application of poverty alleviation theories. Utilizing Bourdieu’s class theory, the study highlights the importance of both social and economic capital in these success narratives. By focusing on real-life experiences, it underscores the relevance and utility of these theories in real-world contexts, enriching the theoretical discourse and providing valuable perspectives for policymakers and practitioners.

The Role of Patient Organizations in Shaping Research, Health Policies, and Health Services for Rare Genetic Diseases: The Dutch Experience.

In 2023, the genetics scientific community celebrated two special anniversaries: the discovery of the double helix structure of DNA was published in 1953 and in 2003 the Human Genome Project was declared completed and made publicly available. To this day, genetics and genomics research is continuing to evolve at high pace and is identifying a steadily increasing number of genes as causal for distinct genetic diseases. The success story of genetics and genomics would not be complete without taking due account of the role of patient advocacy organizations in this process. This paper is based on the personal narrative (oral history) of a father whose daughter was born with a rare genetic disease (RGD) in the 1960s. The first-hand experience of living as a family with an RGD in those days made him a leading pioneer not only in the foundation of patient organizations at national, pan-European, and international levels but also in the development of multi-stakeholder co-operation and networking. Today, patient advocacy organizations play an active role in shaping health and research policies at national, EU, and international levels to ensure that their needs in regard to advancing RGD diagnostics, care, and treatment are addressed.