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RD-ACTION : DATA AND POLICIES for rare diseases – RD-ACTION, the new Joint Action consisting of the member states of the European Union for
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
Solve-RD – Solving the Unsolved Rare Diseases
BlueDil Int'l - European Rare Diseases Gateway
BlueDil int’l is able to work for you all over Europe, establishing strong relationship with local stakeholders (scientific community, KOLS) from patient associations to health authorities to simplify local market access process.
Chiesi Global Rare Diseases | Products for rare diseases
Rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient...
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Author: Suzanne Morris
Rare Disease News, Perspectives & Resources - Rare Disease Advisor
more news >> more features >> Rare Care Podcast Browse Rare Disease Advisor's engaging "Rare Care" podcast series, featuring
Author: Ryner Lai; MBBS
Rare Disease Legislative Advocates | EveryLife Foundation for Rare Diseases
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.
Rare Disease Database
Hypermobile Ehlers-Danlos syndrome and physiotherapy were the main keywords of the research. [Results] 1, articles emerged from the.
Rare Diseases International
Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all rare diseases
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.
ERN Skin – European Reference Network for rare skin diseases
Latest news July 2021 e-news Webinars e-news April 2021 e-news February 2021 e-news Happy New Year 2021 e-news Autumn 2020 newsletter Spring & Summer 2020 newsletter Winter 2020 newsletter ERN-Skin meetings ERN-Skin webinars Other
Healthe-rnd – European eHealth care model for rare neurodegenerative diseases
VASCERN – The European Reference Network on Rare Multisystemic Vascular Diseases
Continue reading
ERICA | The European Rare Disease Research Coordination and Support Action
ERICA , The European Rare Disease Research Coordination and Support Action
ERN BOND – European Reference Network on Rare Bone Diseases
Network ERN BOND is one of the 24 existing European Reference Networks (ERNs). In particular, ERN BOND aims to improve access to high-quality healthcare for patients suffering from rare bone diseases. Mission ERN BOND aims to implement measures that facilitate multidisciplinary, holistic and patient-centred care
Author: Admin
Rare Diseases Ireland – Supporting rare disease patients and their families in Ireland
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.
Other sites like ejprarediseases org
European Joint Doctorate in Occupational Science - P4PLAY Research Programme
The P4PLAY research programme addresses four areas of play: People, Place, Policy and Practice (P4PLAY).The P4PLAY Marie Skłodowska-Curie Innovative Training Network is a European Joint Doctorates programme in Occupational Science for Occupational Therapists.
Rare Disease Pharmaceutical Services | Sciensus Rare
We offer bespoke rare disease medicine services; launching & delivering vital medication & clinical services for families that need it most.
IORD - Indian Organization for Rare Diseases | A not-for-profit organization for Rare Diseases in India.
NGO Committee for Rare Diseases
The NGO Committee for Rare Diseases brings together knowledge and experts to promote rare diseases as a priority in global health, research and social care
CENTOGENE - The Rare Disease Company
CENTOGENE is a world leader in the field of genetic diagnostics for rare diseases dedicated to improve patients' lives every day. Order your genetic test!
Journal of Rare Cardiovascular Diseases
international, quarterly, peer reviewed journal that keeps cardiologists up to date with rare disorders of heart and vessels.
Author: Podolec P
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.
Rare Disease Day Australia
HRA Pharma Rare Diseases
Dedicated to Cushing's syndrome and Adrenocortical Carcinoma and providing important medicines: Metopirone (Metyrapone), Ketoconazole HRA, Lysodren (Mitotane).
Centre for Rare Cardiovascular Diseases
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Rare Diseases and Orphan Drugs
Radico - Rare Disease Cohorts
L’objectif principal de RaDiCo est le recueil prospectif, dans le domaine des maladies rares (MR), de données phénotypiques extensives à des fins de recherche clinique et épidémiologique en lien avec la recherche translationnelle et fondamentale. Ces données peuvent être diverses : anatomiques (imagerie médicale), biochimiques, moléculaires, etc.
Home - Rare Disease UK
What's the UK Rare Diseases Strategy? Where can I find information & support? How can I fundraise for Rare Disease UK? The latest news from RARE DISEASE UK... Lauren’s Story Living with Hereditary Amyloidosis One in a Million Abigail’s story Will’s Story Our work We work on ...
Joint Diseases and Related Surgery
Joint Diseases and Related Surgery (JDRS), the official journal of the Turkish Joint Diseases Foundation, is an international, peer-reviewed, immediate open access journal. All published articles in JDRS has been free for everyone, without embargo, since 1990
Rare diseases Luxembourg , we care 4 rare! - ALAN
We aim to improve the quality of life of individuals and families affected by rare diseases in Luxembourg. Discover how we can help you.
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
eUROGEN - European Reference Network (ERN) for rare and complex urogenital diseases and conditions
European Reference Network (ERN) for rare and complex urogenital diseases and conditions
European Doctoral Programme
European Ordination Programme
European Training Programme
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Diploid - Supporting Rare Disease Diagnostics
HCP Login | Rare Metabolic Diseases
F2G
- The Rare Fungal Disease Company
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.
#WeWearStripes | Rare Disease Day 2021
We created a rare t-shirt to raise awareness among the general public because rare diseases are not so rare, and for the majority of them there is no cure.
Startseite - Rare Diseases Academy 2021
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
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.
Northern Ireland Rare Disease Partnership
Radiorg – Rare Diseases organisation Belgium
Edelweiss Awards 2021 Belgische koepel voor patiënten met een zeldzame ziekte RaDiOrg is de Belgische koepelvereniging voor mensen met een zeldzame ziekte. Wij tellen meer dan 80 verenigingen voor specifieke zeldzame ziekten en tellen ook honderden individuele leden met een ziekte waarvoor geen vereniging bestaat. Onze missie? Zorgen dat de stem van de zeldzame ziekten wordt gehoord door beleidsmakers. Het grote publiek sensibiliseren voor de zeldzame ziekten. De weg wijzen met heldere informatie. Mensen met zeldzame ziekten verbinden. Ruchtbaarheid geven aan de activiteiten voor en door mensen met zeldzame ziekten. We zijn zeldzaam, maar we zijn talrijk! Nieuws Blijf op
Rare Disease Action Forum | RDAF
HCP Login | Takeda Rare Diseases
Zogenix - Therapeutic Solutions for Rare Diseases
Zogenix is committed to developing and commercializing transformative therapies to improve the lives of patients and their families living with rare diseases.
CureCMT4J | Advancing Treatments for Rare Diseases
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
RAMEDIS: Rare Metabolic Diseases Database
The RAMEDIS system is a platform independent, web-based information system for rare metabolic diseases based on filed case reports
Author: Bielefeld University Faculty
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…
Organization For Rare Diseases India | ORDI
ORDI was founded to address the many challenges in the management of rare disease in India. A lack of awareness about rare disease even among doctors means that a diagnosis can often take many years.
Rare Diseases: Models & Mechanisms Network
HCP Login | Takeda Rare Diseases
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My Normal | storytelling for rare disease health
My Normal | storytelling for rare disease health
Author: My Normal
Home - Rare Diseases India Foundation
AllStripes - Be part of the solution for your rare disease
We empower patients and communities to change the way that **** development happens in rare disease.
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.
rDNA | Rare Disease Network of Alberta
The Rare Disease Network of Alberta (rDNA) is a non-profit corporation that was formed in 2018 to help people understand about rare diseases.
CHRODIS - Joint Action on Chronic Diseases
Chronic disease experts across europe are joining forces to identify and share the best ways to prevent and manage chronic disease
Author: Christel Beulque
The European Society for Diseases of the Esophagus
Welcome to Rare Opportunities in Primary Care, your source for information on primary care in rare diseases
Jack McGovern Coats' Disease - Rare Eye Disease - Home Page
Jack McGovern Coats' Disease - Funds research to find a cure for Coats’ Disease and pediatric retinal Disease - We serve as a hub for the Coats’ Disease community
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Bishop Ambrose College, a Roman Catholic Arts and Science Institution was established in the year 1997. The Coimbatore Diocese Society which has established a number of educational institutions in and around Coimbatore district in the cause of serving humanity chose to fulfill a long felt need to open a new college for the benefit of Young men and women.
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