Global Collaborative Social Network Share4rare To Promote Citizen

Corresponding Author: Begonya Nafria Escalera bnafria@sjdhospitalbarcelona.org Received 2020 Jul 21; Revision requested 2020 Sep 30; Revised 2020 Nov 22; Accepted 2020 Dec 20; Collection date 2021 Mar. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR... The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included. Rare disease communities are spread around the globe and segmented by their condition. Little research has been performed on the majority of rare diseases.

Most patients who are affected by a rare disease have no research on their condition because of a lack of knowledge due to absence of common groups in the research community. We aimed to develop a safe and secure community of rare disease patients, without geographic or language barriers, to promote research. Find expert information that is easy to understand. Access our materials and blogs. Meet people like yourself by joining our global community. Share your diseases and your symptoms to help us find people who are just like you for you to connect!

Contribute to research by donating medical information about your disease. Share4Rare is going to be piloted with three groups of conditions: rare tumours, neuromuscular disorders and undiagnosed. Besides, we publish quality medical content for these conditions and more, and other diseases are constantly being added to our activities. A new study on global collaborative social network to promote citizen science in rare disease research has been published in JMIR Formative Research. This new collaborative social network, entitled Share4Rare, is a global secure community of rare disease patients, with publicly accessible information and a research section aiming to collect patient information for further analysis. The core value of this platform is to promote international research.

This platform was designed with consultation and input through workshops from patients, caregivers, clinicians, and researchers. The codesign methods with patients provided a patient-centric design to facilitate the donation of clinical information to foster research dedicated to patients with rare diseases. CORDIS provides links to public deliverables and publications of HORIZON projects. Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE . Toolkit to help rare disease communities raise awareness and advocate for better clinical research in the rare disease field Co-development of the process and definition of guidelines to setup and grow up a participatory social community of patients/families.

This comunity is created to work together to improve the quality of life of patients with rare diseases. Strategic guidelines for the creation and management of the communities offering tools to ensure a user centred approach that can contribute to the sustainability of the communities. 2Sant Joan de Déu Research Institute, Esplugues de Llobregat, Spain 4John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, United Kingdom 5Stichting United Parent Projects Muscular Dystrophy, World Duchenne Organization, Amsterdam, Netherlands 7Center for Biomedical Engineering Research, Universitat Politècnica de Catalunya, Barcelona, Spain

8Melanoma Patient Network Europe, Uppsala, Sweden Background: Rare disease communities are spread around the globe and segmented by their condition. Little research has been performed on the majority of rare diseases. Most patients who are affected by a rare disease have no research on their condition because of a lack of knowledge due to absence of common groups in the research community. Objective: We aimed to develop a safe and secure community of rare disease patients, without geographic or language barriers, to promote research. Methods: Cocreation design methodology was applied to build Share4Rare, with consultation and input through workshops from a variety of stakeholders (patients, caregivers, clinicians, and researchers).

Results: The workshops allowed us to develop a layered version of the platform based on educating patients and caregivers with publicly accessible information, a secure community for the patients and caregivers, and a research... Conclusions: Rare disease research requires global collaboration in which patients and caregivers have key roles. Collective intelligence methods implemented in digital platforms reduce geographic and language boundaries and involve patients in a unique and universal project. Their contributions are essential to increase the amount of scientific knowledge that experts have on rare diseases. Share4Rare has been designed as a global platform to facilitate the donation of clinical information to foster research that matters to patients with rare conditions. The codesign methods with patients have been essential to create a patient-centric design.

npj Complexity volume 2, Article number: 35 (2025) Cite this article Collaboration enables groups to solve problems beyond the reach of their individual members in contexts ranging from research and development to high-energy physics. While communication networks play a pivotal role in group success, there is a longstanding debate on the optimal network topology for solving complex problems. Prior research reaches contradictory conclusions–some studies suggest networks that slow information transmission help maintain diversity, leading groups to explore more of the problem space and find better solutions in the long run, while others... Many existing models assume that individuals use their network connections only to copy better-performing group members, but we show that such groups often perform worse than if individuals worked independently. Instead, our model introduces a crucial distinction: in addition to copying, individuals can actively collaborate, leveraging diverse perspectives to uncover solutions that would otherwise remain inaccessible.

Our findings reveal that the optimal network structure depends on the balance between copying and collaboration. When copying dominates, inefficient, exploration-focused networks lead to better outcomes. However, when individuals primarily collaborate, highly connected, efficient networks win out. We also show how groups can reap the benefits of both strategies by employing a collaborate first-copy later heuristic in highly connected networks. The results offer new insights into how organizations should be structured to maximize problem-solving performance across different contexts. In 1905, Einstein was stuck, flummoxed by contradictions in Newtonian mechanics and Maxwell’s equations of electromagnetism.

He famously turned to his friend and fellow patent office employee, Michele Besso. During a long night of discussion, Besso reminded Einstein of a central idea promoted by the Austrian physicist Ernst Mach: all measurements are relative. The next morning, Einstein returned to his friend saying, “Thank you, I’ve completely solved the problem.” Shortly thereafter, he published the first paper on his theory of special relativity, arguably one of the most... In 1953, while racing to develop a model of DNA’s structure, the molecular biologist James Watson visited King’s College London. There, he saw Rosalind Franklin’s now famous Photograph 51. With her expertise in chemistry and X-ray crystallography, Franklin created the image using a special system she developed that involved bubbling hydrogen through salt solutions, allowing her to capture a much clearer image of...

In Watson’s words, “The instant I saw the picture my mouth fell open and my pulse began to race”3. The unique perspective gained from Franklin’s image allowed Watson and Crick to complete the model that ultimately led to a Nobel Prize in 1962. In 2009, Fields medalist Timothy Gowers challenged his blog’s readers to find a combinatorial proof of the density Hales-Jewitt Theorem–a problem he himself had been unable to solve4. After six weeks and nearly 1000 comments from individuals with experience ranging from a fellow Fields medalist to high school mathematics teachers, Gowers declared the team of online collaborators had collectively found the proof,... Polymath 5,6. CORDIS bietet Links zu öffentlichen Ergebnissen und Veröffentlichungen von HORIZONT-Projekten.

Links zu Ergebnissen und Veröffentlichungen von RP7-Projekten sowie Links zu einigen Typen spezifischer Ergebnisse wie Datensätzen und Software werden dynamisch von OpenAIRE abgerufen. Toolkit to help rare disease communities raise awareness and advocate for better clinical research in the rare disease field Co-development of the process and definition of guidelines to setup and grow up a participatory social community of patients/families. This comunity is created to work together to improve the quality of life of patients with rare diseases. Strategic guidelines for the creation and management of the communities offering tools to ensure a user centred approach that can contribute to the sustainability of the communities. For centuries, common aspirations for mutual respect, peace, and understanding were reflected in traditional concepts across cultures and civilizations – from 'ubuntu' (I am because we are) in African philosophy to 'sumak kawsay' (harmony...

Although the term "global citizenship education" was only coined in 2011, the values it represents have been central to UNESCO's mission since its founding in 1947. By building peace through education and reminding humanity of our common ties, UNESCO has long championed the ideas now formalized as GCED. As our world grows increasingly interdependent, GCED is more vital than ever for international solidarity and inspiring learners of all ages to positively contribute to their local and global communities. But what exactly does global citizenship education entail, why does it matter today, and how is UNESCO driving this movement? Unlike citizenship — rights, privileges and responsibilities related to "belonging" to a particular nation/state, the global citizenship concept is based on the idea that we are connected not with just one country but with... So, by positively contributing to it, we can also influence change at the regional, national and local levels.

Global citizens don't have a special passport or an official title, nor do they need to travel abroad or speak multiple languages to become one. Being a global citizen is more about mindset and everyday actions a person takes. A global citizen understands how the world works, values differences in people, and works with others to find solutions to challenges too big for any one nation. Citizenship and global citizenship do not exclude each other. Instead, these two concepts are mutually reinforcing. Economically, environmentally, socially and politically, we are linked to other people on the planet as never before.

With the transformations that the world has gone through in the past decades — expansion of digital technology, international travel and migration, economic crises, conflicts, and environmental degradation — how we work, teach and... UNESCO promotes global citizenship education to help learners understand the world around them and work together to fix the big problems that affect everyone, no matter where they're from.

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