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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.
ROMACT | Support and coordinate actions to assist the Roma community
Our desire to support and coordinate actions to assist the Roma community via the European Commission and the Council of Europe.
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
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
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 Reference Network - Eye Diseases
European Reference Network - Rare Eye Diseases
Rare Diseases International
Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all 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.
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Author: Suzanne Morris
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.
Children’s Liver Disease Foundation | Liver Disease Research and Support
Children’s Liver Disease Foundation. Fighting childhood liver disease by providing information, emotional support, research.
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.
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 ...
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
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
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...
Batten Disease Support & Research Association
ABOUT US BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA
Author: Tom Evans
UK ATTR Amyloidosis Research Association - Journal of Rare Diseases
Journal of Rare Diseases
Author: Jayden Ortiz
Project Sebastian A Rare Disease Foundation Funding Support
We at Project Sebastian gives support, funding and hope to families affected by a child with a rare disease. Provide education, therapies, and counseling.
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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
Peak body for Australians with rare diseases including genetic disorders
Many Voices ONE GOAL YOUR NATIONAL STRATEGIC ACTION PLAN FOR RARE DISEASES Read the Action Plan now Rare Voices Australia (RVA) is the peak national body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as
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
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.
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.
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
My Normal | storytelling for rare disease health
My Normal | storytelling for rare disease health
Author: My Normal
Genetic Support | Rare Diseases | Genetic Alliance Australia | Support for those affected directly or indirectly by genetic conditions s
Support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia. Information, support network, personal stories, news and events.
Research in Plant Disease
Research in Plant Disease is an international journal for papers related to fundamental research that advances understanding of the nature of plant diseases and rapid reporting of research on new diseases, epidemics and methods for disease control. It covers basic and applied research focusing on practical aspects of disease diagnosis and treatment
Author: Hyo-Jeong Lee; Ki Beom Park; Yeon Soo Han; Et Al
Carion Fenn Network - Syringomyelia, Chiari Malformation, Rare & Chronic Diseases and Seniors Support.
Welcome to Carion Fenn Network. A place to share, learn & support. (Syringomyelia/Chiari Malformation/ Rare & Chronic Diseases & Seniors)
Author: Subscriber SM; CM
#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.
Me, You and PKU – a rare disease, a wonderful life
a rare disease, a wonderful life
Author: Elisakb
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.
Independent Support Coordination – NDIS Support Coordination Moreton Bay Region
Independent Support Coordination NDIS Support Coordination in the Moreton Bay Region Helping you get the most out of your NDIS plan Independent Support Coordination (ISC) was created to provide support coordination for
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Forest Foliar Coordinating Centre
In order to support the European Commission and the ICP-Forest in the coordination of this Pan-European survey the Forest Foliar Coordinating Centre (FFCC) was set up at the Austrian Federal Office and Research Centre for Forests (Vienna) in 1994.
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
Orphanews - Rare diseases newsletter - OrphaNews - International
Orphanews is the Newsletter of the Rare Diseases Community
AcceleRare – Advancing **** discovery for rare diseases
Advancing **** discovery for rare diseases
Space Telescope-European Coordinating Facility
Space Telescope-European Coordinating Facility
Author: Martin Kmmel
European Federation of Parasitologists
The main objectives of the European Federation of Parasitologists are : - to promote the exchange of knowledge on parasitic organisms and diseases - to coordinate researches and networks related to parasitic organisms - to support of basic, veterinary & medical Parasitology - to attract young scientists and students to develop researches in Parasitology - to organize a European Multicolloquium of Parasitology (EMOP) every 4 years
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FutureNeuro: SFI Research Centre for Neurological Diseases
FutureNeuro is an SFI Research Centre to develop new technologies and solutions for the treatment, diagnosis, and monitoring of chronic and rare neurological diseases.
3billion | Genetic test for rare disease patients
Patients with rare genetic disease undergo long odyssey to receive a diagnosis. Visit 3billion and find how to order our rare disease genetic testing.
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.
Pathways Support Coordination
Pathways Support Coordination
Author: Pathways Support Coordination
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 - Coordination and Care - NDIS Support Coordination
Coordination and Care is about providing a personalized NDIS support coordination service for those participating within the NDIS.
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.
Yellowstone Research Coordination Network
The Yellowstone National Park Research Coordination Network is a collaboration of scientists and NPS staff to develop a coordinated research network focused on geothermal biology and geochemistry.
PDLab - research into Parkinson's Disease
Parkinson's Disease Research
Crinetics - Developing Therapies For Rare Endocrine Diseases
Crinetics is here for rare endocrine disease patients who are eager to find therapies that provide effective disease control and more simplicity in their lives.
Clinical Research Coordination - Clinical Research Coordination
A Clinical Research Coordination Kft-t azzal a céllal alapítottuk, hogy hatékonyan segítséget nyújtson a humán klinikai vizsgálatok pontosabb és gyorsabb kivitelezésében
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.
Endo-ERN | European Reference Network on Rare Endocrine Conditions
Endo-ERN , European Reference Network on Rare Endocrine Conditions, European Reference Network on Rare Endocrine Conditions. Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research.
Author: RareEndoERN
Home - Brightt - NDIS Support Coordination and Behaviour Support
‘Grow the life you want’. Specialist Support Coordination, Support Coordination and Positive Behaviour Support.
Welcome to the website of the European Cement Research Academy
The European Cement Research Academy (ECRA) supports and conducts research activities on the production of cement and its application in concrete.
Author: European Cement Research Academy GmbH
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.
Khure Health: Identifying Rare Disease Patients
Empowering physicians to identify rare disease patients and put them on the right care pathway.
Author: Drawesome
Your Voice Support Coordination Services
Specialist Support Coordination
Author: Your Voice Support Coordination Services
IN THE DRIVERS SEAT SUPPORT COORDINATION - Home
Independent NDIS Support Coordination, Specialist Support Coordination & Plan Management
Nanonets2Sense - Research and Inovation Action Project
All about the Nanonets2Sense Project. It is a Research and Inovation Action Project (2016-2019) funded by the European Commission under the H2020 Program
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Infect-ERA | Infect-ERA
Website of the ERA-NET Infect-ERA: Coordination of European funding for infectious diseases research.
Diseasemaps - World Maps of Chronic and Rare Diseases
Connect with people who share your disease and help each other. World Maps of Chronic and Rare Diseases. The main purpose of the project is to help people with chronic and rare diseases. Living with these diseases is usually hard and it is not always properly understood by society. Therefore, we want to spread awareness about all of them and help people who are nowadays suffering. Through this website, you can check how your disease is spread all over the world.
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…
European Research Center
European Research Center | EURREC Journals | EURREC Conferences | 2021 | European Research Center s.r.o.
Author: Intercore Solutions S R O
Coordability - Support Coordination, Support Coordination, Sunbury
Victorian Support Coordination services within Sunbury, Hume Macedon Ranges, Melton and Brimbank areas.
GRACE PROFESSIONAL SERVICES - NDIS Support Coordination – specialist support coordination – disability supports
Grace Professional Services provides NDIS Support Coordination and NDIS Specialist Support Coordination. We will work with you to find the right supports to meet your goals, needs and aspirations.
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!
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
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.
Delegation of the European Union to the United States - European External Action Service
EEAS - European External Action Service - European Union External Action
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TENT Studie | Triage of Elderly Needing Treatment
TENT Studie , Triage of Elderly Needing Treatment, TENT-studie doet onderzoek bij oudere patiënten die mogelijk een ingrijpende behandeling moeten ondergaan, zoals een operatie of chemotherapie. Het doel van de studie is de zorg voor de oudere patiënt te verbeteren.
Author: TENT Studie
COVID-OLD | COVID-19 Ouderen Landelijke Database
COVID-OLD , COVID-19 Ouderen Landelijke Database, Het doel van het COVID-OLD onderzoek is om uitkomsten van ouderen die met het nieuwe coronavirus worden opgenomen in het ziekenhuis te onderzoeken. Het doel hiervan is om de zorg voor ouderen met coronavirus in de toekomst verder te kunnen verbeteren.
IEMO Studie | Instituut voor Evidence-Based Medicine voor Ouderen
IEMO Studie , Instituut voor Evidence-Based Medicine voor Ouderen, Het Instituut voor Evidence-Based Medicine voor Ouderen | IEMO heeft als doel om de kwaliteit van de zorg voor ouderen te verhogen, door hun behandeling wetenschappelijk te onderbouwen en professionals daarover op te leiden.
Author: IEMO Studie
APOP Studie | Acuut Presenterende Oudere Patiënt
APOP Studie , Acuut Presenterende Oudere Patiënt, Het APOP screeningsprogramma is ontwikkeld om de uitkomsten voor ouderen die de spoedeisende hulp (SEH) bezoeken te verbeteren door het leveren van extra zorg. Het screeningsprogramma is nu officieeel gepubliceerd en we willen zorgverleners aanmoedigen om ermee aan de slag te gaan.
Author: APOP Studie
MONA | Tolken • Vertalen • Trainen
De tolken en vertalers van MONA zijn gespecialiseerd in de talen en culturen van het Midden-Oosten en Noord-Afrika. MONA is daarnaast een door Bureau Wbtv erkende PE-aanbieder die cursussen aanbiedt
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JAN* Advocatuur | JAN* is mr. Eric Janssen
JAN* is mr. Eric Janssen Wie is JAN* JAN* staat voor Juridisch Advies Nijmegen. Het verwijst natuurlijk ook naar de achternaam van JAN*’s eigenaar:mr. H.T.J. (Eric) Janssen Ervaren advocaat Voor
Author: JAN Advocatuur
Advocatenkantoor El Hannouche B.V. | Duidelijk, deskundig en doelgericht
Binnen ons kantoor oefenen wij zowel de advocatenpraktijk als mediationpraktijk uit. Onze advocatenpraktijk richt zich op het personen- en familierecht en het strafrecht. Klik hier om uw zaak direct aan
Author: Advocatenkantoor El Hannouche
Hondenschool de Laar | voor leuke en beloninggerichte opvoeding van uw hond
De Laar, hondenschool voor Arnhem en omstreken. Hondenschool De Laar is gespecialiseerd in hondengedrag en we trainen beloningsgericht. Wij hebben de beschikking over een eigen, ruime, buiten- en binnenlocatie. Zo staat u altijd droog en kunnen trainingen ook bij slecht weer doorgaan. Luisteren is Leuk! Beloningsgerichte opvoeding geschikt voor elke hond en baas
Author: Jolein van Weperen
Ιδρυση Εταιρειας στη Βουλγαρια - Φορολογια στη Βουλγαρια - Taxbg.gr
Ιδρυση εταιρειας στη βουλγαρια σε λίγες ώρες. Φορολογια στη Βουλγαρια 10%. Πλήρης Λογιστική Υποστήριξη, Διαχείριση Εξαγωγών, Αλλαγή Φορολογικής Κατοικίας, Μεταφράσεις Κειμένων, Νομικές Υπηρεσίες από την Taxbg. Δείτε τις τιμές για την ιδρυση εταιρειας στη Βουλγαρια, τις αμοιβές για λογιστική υποστήριξη και τις δωρεάν
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Pure Mushrooms - Biologische Medicinale Paddenstoelen
Paddenstoelsupplementen van traditionele paddenstoelboerderijen ✔ Biologisch ✔ Extra acerola ✔ Bereid volgens oude receptuur
de Stimulus Fysiotherapie | De Stimulus is een kleine, gespecialiseerde en onafhankelijke fysiotherapiepraktijk in Arnhem
De Stimulus (Ida de Boer) is een kleine, gespecialiseerde en onafhankelijke fysiotherapiepraktijk in Arnhem. Tijd en aandacht voor de individuele patiënt zijn bij De Stimulus (Ida de Boer) het allerbelangrijkste. Geen eenheidsbehandelingen of groepstherapie, maar maatwerk voor iedere patiënt. Fysiotherapie is hier een ambacht. Ida de Boer is een dry needling (dryneedling) specialist in Arnhem. Aandachtsgebieden Myofasciale pijn, triggerpoints, Kaakpijn, tandpijn,kiespijn,Muziek gerelateerde klachten.
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Stadtteilbücherei St. Clemens – Bücherei in Münster-Hiltrup
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Lombra - Absolutamente tudo sobre maconha.
Elevando a disucussão em torno da cultura canábica e desmistificando os usos da maconha.
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Field of Schemes
sports stadium news and analysis
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masjidalakbar - Home Improvement, services and Real Estate
Home Improvement, services and Real Estate
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Home - विद्याभारती E पाठशाला
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UK Powder Coating - Manufacturers of Powder Coating Machinery
UK Powder Coating manufacture cost effective, high quality and efficient powder coating plant including curing ovens, spray booths and our market leading pre-treatment solution Auto Wash.
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Everything you will ever need to know about roller coasters - who makes them, different types, world records, accidents and discussions!
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AVA Group - Australian Dining and QSR Construction Specialists
AVA Group provides a complete array of project management and construction services in the restaurant, retail and commercial sectors, Australia wide.
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Beauty Parfum Home - Beauty Parfum
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