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Rare Diseases International
Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all rare diseases
Healthcare | Rare Diseases South Africa | Charity
Bridging the gap to improved quality of life for those impacted by Rare Diseases and congenital disorders through advocacy and empowerment.
RDNZ | Home
Rare disease information gateway, support groups directory, practical advice, health and disability resources, research information, news and issues.
Rare Disease Day ® 2021
The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
Rare Disease Database, Rare Disease Conditions, Federated Data Sharing
RARE-X, the Rare Disease Database Platform, collects and shares patient-owned health data with researchers across the globe to spur new treatments and cures.
Home | Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, NCATS, is made up of 21 disease research groups (consortia) and a Data Management and Coordinating Center that work together to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community.
ERN-LUNG | Rare Respiratory Diseases
WELCOME TO ERN-LUNG ERN-LUNG is a patient-centric network of European healthcare providers and patient organisations, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through patient care, advocacy, education, research and knowledge-sharing. A non-profit project of building a clinical care network for all rare diseases of the respiratory
Author: Heidi Menges
Rare2Aware – Bringing hope to people with rare diseases
Rare2Aware is a place to learn about rare diseases and bring together patients, their family, caregivers, healthcare professional and advocates
My Normal | storytelling for rare disease health
My Normal | storytelling for rare disease health
Author: My Normal
European Conference on Rare Diseases - ECRD2020
The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community – patient representatives, […]
Author: Rare Diseases Europe
Cure Rare Disease
Cure Rare Disease™ is developing customized therapeutics for those who have been diagnosed with rare, genetic diseases that have no treatment or cures. Through partnerships and collaboration, our world-renowned researchers build life-saving therapeutics that are custom to the patient they are made to treat.
Wyndham Membership Organisation | Committee for Wyndham
Committee for Wyndham brings together business, community, government and Individuals to promote and enhance the economic and social well-being of Wyndham.
ERICA | The European Rare Disease Research Coordination and Support Action
ERICA , The European Rare Disease Research Coordination and Support Action
Rare Genetic Diseases | Ultragenyx
Ultragenyx is a clinical-stage biopharmaceutical company committed to bringing to market novel products for the treatment of rare and ultra-rare diseases, with a focus on serious, debilitating genetic diseases. Founded in 2010, the company has rapidly built a diverse portfolio of product candidates with the potential to address diseases for which the unmet medical need is high, the biology for treatment is clear, and for which there are no approved therapies.
Home - NGO Consultancy, NGO Registration, NGO Funding
NGO Consultancy Services Chanakya NGO Consultancy is providing Consultancy Services for Non Governmental Organisations (NGOs) and Non Profit Organisations (NPOs) in India for last 26 years. Chanakya is well experienced, well expert, with in-depth knowledge about the NGO Formation, NGO Registration, NGO Funding, NGO Grants, NGO Management and documentation for social welfare and social development […]
Rare Disease Foundation
The Rare Disease Foundation is on a mission to find cures and treatments through its innovative patient-centric approach to research. The Foundation also funds and operates programs that provide resources through community and clinical support channels.
Allies in Rare Disease - Global Genes
Global Genes mission is to connect, empower and inspire the rare disease community. Learn more about our events, resources and communities.
Allies in Rare Disease - Global Genes
Global Genes mission is to connect, empower and inspire the rare disease community. Learn more about our events, resources and communities.
Dolon | Rare diseases strategic pricing and market access consultancy
Treatments for rare diseases face unique challenges in getting to market. Companies developing rare disease treatments need a specialised approach to prepare for pricing and reimbursement negotiations globally. At Dolon, we specialise in strategic pricing and market access for rare and severe diseases.
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Rare Disease and Orphan Drugs Journal
Rare Disease and Orphan Drugs Journal (RDODJ) is an international, peer-reviewed, open access journal. RDODJ will report on scientific advances in the genetics of rare diseases, the molecular basis of the pathologies, and translational research on diagnosis, prevention and treatment. In addition, RDODJ aims to provide a forum for scientific studies and discussion covering the important regulatory, socio-economic and human science issues related to rare diseases and orphan drugs.
Author: Daniel Scherman
Rare Trait Swiss- AGU Rare Disease: Aspartylglucosaminuria
Rare Trait Swiss is a Non-Profit organization which contribute to raise awareness of an Lysosomal rare disease called AGU. Our goal is to fund the medical research to manufacture the cure for AGU kids and to fund a clinical trial using gene therapy
Are you living with a rare disease? | Honeycomb Health
Honeycomb empower patients suffering from rare diseases by providing them with the ability to securely store, access, and share their health information all in one.
CSL Behring | Rare Disease Biotech Company
CSL Behring is a global biotechnology leader driven by its promise to save and improve lives. We manufacture remedies for serious and rare diseases.
TBTBGLOBAL - Helping the rare and cancer disease communities
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ISSVD | Vulvar Disease | Research and Education
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EHRN
The Environmental Health Research Network brings environmental health researchers together to share knowledge and ideas.
Physicians Committee for Responsible Medicine
The Physicians Committee for Responsible Medicine is a nonprofit health organization that promotes preventive medicine, conducts clinical research, and encourages higher standards for ethics and effectiveness in research and medical training.
RAREVE - relieve people with rare diseases
In Rareve our mission is to relieve people with rare diseases. Build a community, knowledge base and full of support and professional help place for people. If you feel that you need help, or you can help yourself, than…
Home « INFECTIOUS DISEASES INSTITUTE
Infectious Diseases Institute, Uganda, Research, Prevention Care and Treatment, PCT, ****, AIDS, TB, Global Health Security
Australian Chronic Disease Prevention Alliance - ACDPA
The Australian Chronic Disease Prevention Alliance (ACDPA) brings together five leading health organisations to prevent chronic disease and reduce risk factors.
Rare Diseases: Genetics and Metabolism – MRGM Research aims to decipher the molecular mechanisms laying at the root of the physiopathology o
MRGM Research aims to decipher the molecular mechanisms laying at the root of the physiopathology of rare diseases and make our findings worth for patients.
Mediterranean Journal of Hematology and Infectious Diseases
An international open forum for bringing together experts in hematology and infectious diseases from Mediterranean area and all around the world to investigate relationship between haematological and infectious diseases
Author: Mediterranean Journal; Infectious Diseases
Support for patients with chronic illness or rare disease
We provide social-emotional support for patients, teens, young adults, and seniors who are living with chronic illness, rare disease, long-covid, who are undiagnosed, or who are carriers of disease. Connect with patients, make a friend, get support, chronic illness coach, society for teens.
Author: Chronic Warrior Collective
Lyme Disease
The Lyme and Tick-Borne Diseases Research Center brings together leading clinicians and scientists to enhance patient care and recovery, using precision medicine to solve urgent clinical questions.
Pharma Conference London | Orphan Drugs & Rare Diseases 2022
Orphan Drugs & Rare Diseases Global Congress is a unique tri-annual Congress for the orphan **** & industry, taking place on the 13th-15th of September 2021.
Author: Paradigm Global Events
Consumer and Community Involvement Program
We bring together consumers, community members and researchers to make decisions about health research priorities, policy and practice
ISSAID - International Society of Systemic Auto-Inflammatory Diseases
The aim of ISSAID is to raise awareness, catalyse basic research and promote scientific and clinical knowledge on all aspects of systemic auto-inflammatory diseases.
HealthMap | Flu Map | Contagious Disease Surveillance | Virus Awareness
HealthMap brings together disparate data sources to achieve a unified and comprehensive view of the current global state of infectious diseases.
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Retina International
Retina International (RI) is a patient-led, global, umbrella NGO for patient-led groups around the world focused on research and support for rare and common retinal diseases.
Toxics | Ontario | Coalition for Action on Toxics
Coalition for Action on Toxics brings together passionate experts, researchers, and representatives from health and environmental NGOs with a shared belief that all Canadians deserve an equal chance to live a healthy life in a healthy environment.
LaRed - Mexican Emerging Infectious Disease Clinical Research Network
LaRed (Mexican Emerging Infectious Disease Clinical Research Network) is a global leader in clinically relevant research on emerging infectious diseases including influenza and other viruses that will impact clinical practice and public health policy.
ERN-RITA: European Reference Network for Immunodeficiency, Autoinflammatory, Autimmune and Paediatric Rheumatic diseases
RITA brings together leading European centres with expertise in diagnosis and treatment of rare immunological disorders Primary immunodeficiency (PID), Autoinflammatory disorders, (AID) Autoimmune disease (AI) and Paediatric Rheumatic diseases (PR)
Changing the game - The Nathan Project for Rare Diseases
Kids with rare diseases often fall through the cracks of healthcare systems, causing serious problems for patients, their families, and the doctors who treat them. We are developing a needs assessment tool to help doctors and researchers find and fix these gaps, transforming the lives of these families. Left: Our ambassador, Nathan Garcia […]
Cycle Pharmaceuticals – Treatments for rare disease patients
WHAT WE DO Cycle Pharmaceuticals is a global, privately-owned and patient-dedicated biotechnology company headquartered in Cambridge in the UK. Our mission is to utilise the latest pharmaceutical technologies to deliver superior **** treatments to better serve rare genetic disease patients. In addition, we provide individualised patient support services to
Author: Web Admin
Health Systems Global |
A diverse, global membership organization dedicated to promoting health policy and systems research (HPSR) and knowledge generation.
Vanitec
Vanitec is the only global vanadium organisation. Vanitec is a technical/scientific committee bringing together companies in the mining, processing, research and use of vanadium and vanadium-containing.
Author: Dr Yu Li
European Expert Group on OD Incentives
The multidisciplinary and cross-functional expert group brings together representatives of the broad rare disease community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations. This group aimed to become the source of ground-breaking ideas and potential solutions that will provide input to the Orphan Medicinal Products (OMP) Regulation […]
EU Healthcare & Social Care News | Health Europa
Health Europa brings you up to the minute news and developments from across the EU Healthcare & Social Care News sector and European (EU) health policy including the latest innovations in health research technology, pharmaceutical news, research into diseases and common health conditions and social care.
Homepage Ipsen - Fondation Ipsen
Rare Diseases Rare but not alone Mission Accelerate rare disease diagnosis There are 7,000 rare diseases affecting 300 million people worldwide. 75% of patients are children. 1 in 2 patients do not have an accurate diagnosis. A quarter of patients wait 4 years to get a diagnosis. Our program brings together world experts to improve … Homepage Ipsen Read More »
GFS Home Page
The Great Family Search Conference brings together expert presenters and genealogy researchers of all levels for sharing of information and gaining knowledge.
The British Association for Psychopharmacology | Home
The British Association for Psychopharmacology (BAP) promotes research and education in psychopharmacology, and brings together people in academia, health services, and industry
World Conference on Qualitative Research (WCQR)
The World Conference on Qualitative Research (WCQR) is an annual event that aims to bring together researchers, academics and professionals, promoting the sharing and discussion of knowledge, new perspectives, experiences and innovations on the field of Qualitative Research.
Looking for a Health Economist? We can help connect you. | Network of Alberta Health Economists
Network of Alberta Health Economists (NOAHE) - to improve health economics capacity in Alberta, facilitate collaboration between researchers, serve as an organized collective resource for health system decision makes, promote integrated knowledge translation for health system stakeholders, bring together users and producers of health economics evidence and analysis.
HRB Mother & Baby Clinical Trials Network | HRB MBCTNI
The HRB MBCTNI brings together leading Irish obstetric and neonatal researchers, with an international reputation to address problems in women and children’s health that will have a global impact.
Author: Cormac McAdam
Home | Firebolt Health
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The Society for Perioperative Research and Care's (SPRC) mandate is to bring together learners, clinicians and researchers engaged in Perioperative Medicine and to promote its practice globally. The Society is dedicated to promoting perioperative education and research and ensuring optimal perioperative care informed by the best research evidence. Its members provide information, education, mentoring and
Author: Leeanne Akehurst
HOME | Academic Publishing Platforms
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Author: Doniyor Burikulov; Http; Burikulov Com
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HOME - NCCPH
Established in 2005 and funded through the Public Health Agency of Canada, the six National Collaborating Centres (NCCs) for Public Health work together to promote the use of scientific research and other knowledge to strengthen public health practices, programs and policies in Canada.
Global Liver Institute
Global Liver Institute wants to bring innovation and collaboration to the fight against liver diseases. We hope to address the gaps in attention, education, support, and research around improving liver health.
AGRO – A Division of the American Chemical Society
AGRO, a Division of the American Chemical Society, brings together a worldwide community of scientists and stakeholders to advance knowledge and promote innovative solutions for the protection of agricultural productivity, public health, and environment.
Global Knowledge Academics - Proud to be scholar!
Global Knowledge Academics We are an organization committed to creating communities of theoretical and practical knowledge, bringing together scholars from all over the world to discuss a wide range of academic disciplines. These communities of researchers gather at on-site and virtual conferences and through GKA's journals
Author: GKAcademics
Home
Global Health Investment Fund Portfolio Addresses the COVID-19 Pandemic An innovative response to the challenge of financing global health research and development. The Global Health Investment Fund (GHIF) is a $108 million social impact investment fund designed to provide financing to advance the development of drugs, vaccines, diagnostics and other interventions against diseases
Author: Admin
EASST
EASST is the European Association for the Study of Science and Technology. Established in 1981 it is the organization which represents academics and researchers in the fields of science and technology studies, the social analysis of innovation and related areas of knowledge. It brings together a var
Author: Corinna Wegscheider
Balanced
We are experts in helping people change their behaviour to improve health and well being and we have put all this knowledge into Balanced. We bring together the latest scientific evidence on helping people change their behaviour and package it together to help you.
Tuberculosis and Respiratory Diseases
Tuberculosis and Respiratory Diseases (NLM title: Tuberc Respir Dis) is an international peer-review journal that published basic, translational, clinical research, and clinical practice guideline to promote women's health and prevent obstetric and gynecologic disorders. The journal has an international editorial board and is published in English on the 15th day of every other month. Submitted manuscripts should not contain previously published material and should not be under consideration for publication elsewhere.
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in India |Charitable Trust & NGO in India |Best NGO
INDIAN FOUNDATION is a NGO whose run welfare and development projects for women, children, rural youths, poor peasants, disables, tribal people and other marginalized and deprived social groups in the field of education, health, environment, income generation activities for weaker sections, promotion of science and technology, rural development, promotion of Indian art & culture, tribal welfare, application of non conventional energy resources, consumer awareness, road safety, **** abuse prevention, integrated development, income generation activities through self-help groups.
CTAUN | Committee on Teaching About the United Nations
CTAUN provides educators worldwide with opportunities to learn about the work of the United Nations and to incorporate this global awareness into curricula and school activities at all levels. We organize conferences to bring educators together with international experts at the United Nations and around the country. We facilitate curriculum development on international issues. Through […]
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