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  1. rud.lbg.ac.at
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  2. Ludwig Boltzmann Institute for Rare and Undiagnosed Diseases

  3. ultragenyx.com
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  4. 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.

  5. geneticalliance.org.uk
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  6. Helping families affected by genetic, rare and undiagnosed conditions | Genetic Alliance UK
    We work on issues that families and individuals with genetic conditions face. We provide information, support families and influence the services needed by these patients. Our work includes: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
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  7. rareundiagnosed.org
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  8. Rare and Undiagnosed Network
    To empower rare & undiagnosed patients and their families with genomic information and community through advocacy, networking and support.

  9. 3billion.io
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  10. 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.

  11. udninternational.org
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  12. UDNI - Undiagnosed Diseases Network International

  13. icord.es
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  14. ICORD | International Collaboration on Rare Diseases and Orphan Drugs
    ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs.
    Author: Published; Last Modified

  15. rarevoices.org.au
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  16. 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

  17. instituteofgenetics-ou.org
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  18. Welcome to Institute of Genetics & Hospital for Genetic Diseases | OU GENETICS

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  20. 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...

  21. geneticalliance.org.au
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  22. 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.

  23. camraredisease.org
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  24. Cambridge Rare Disease Network - Cambridge Rare Disease Network
    Cambridge Rare Disease Network - Cambridge Rare Disease Network
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  25. rarediseaseadvisor.com
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  26. Rare Disease News, Perspectives & Resources - Rare Disease Advisor
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  27. everylifefoundation.org
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  28. Rare Disease Legislative Advocates | EveryLife Foundation for Rare Diseases

  29. rarediseasefoundation.org
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  30. 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.

  31. reboteder.tk
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  32. Rare Disease Database
    Hypermobile Ehlers-Danlos syndrome and physiotherapy were the main keywords of the research. [Results] 1, articles emerged from the.

  33. rarediseasesinternational.org
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  34. Rare Diseases International
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  35. cureraredisease.org
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  36. 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.

  37. jewishgeneticdiseases.org
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  38. Jewish Genetic Disease Consortium | Working to Prevent Jewish Genetic Diseases
    What couples should know about how genetics can affect their baby It is not just Tay-Sachs… there are now carrier tests for many more diseases. Carrier screening is recommended for everyone planning to have a child. Prior to testing consult with a genetic counselor to review the best options for screening. The best time to ... Read more

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  40. Rare Diseases Ireland – Supporting rare disease patients and their families in Ireland

  41. rare-x.org
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  42. 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.

  43. uaegda.ae
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  44. UAE Genetic Diseases Association (UAEGDA) – UAE Genetic Diseases Association (UAEGDA)

  45. sciensusrare.com
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  46. 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.

  47. knowyourgenes.org
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  48. Genetic Testing Information from the Genetic Disease Foundation | KnowYourGenes.org
    Information about genetic testing and genetic counseling from the Genetic Disease Foundation.

  49. rarediseases.in
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  50. IORD - Indian Organization for Rare Diseases | A not-for-profit organization for Rare Diseases in India.

  51. ngocommitteerarediseases.org
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  52. 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

  53. centogene.com
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  54. CENTOGENE - The Rare Disease Company
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  55. jrcd.eu
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  56. Journal of Rare Cardiovascular Diseases
    international, quarterly, peer reviewed journal that keeps cardiologists up to date with rare disorders of heart and vessels.
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  58. HRA Pharma Rare Diseases
    Dedicated to Cushing's syndrome and Adrenocortical Carcinoma and providing important medicines: Metopirone (Metyrapone), Ketoconazole HRA, Lysodren (Mitotane).

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  60. Centre for Rare Cardiovascular Diseases
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  61. rarejournal.org
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  62. Rare Diseases and Orphan Drugs

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  64. 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.

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  66. 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 ...

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  68. Rare diseases Luxembourg , we care 4 rare! - ALAN
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  70. 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

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  72. Transforming Management of Genetic Disease | Natera
    Natera is a global leader in cell-free DNA (cfDNA) testing with a focus on women’s health, oncology, and **** health. Natera offers highly accurate solutions for noninvasive prenatal testing (NIPT), genetic-carrier screening, (PGD/PGS), and miscarriage testing. Learn more.

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  74. MOU with UAE Genetic Diseases Association

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  75. leadforrareobesity.com
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  76. Introduction to Rare Genetic Disorders of Obesity
    In rare instances, a rare genetic disorder of obesity can stop your brain from understanding when your body is full. Learn how this can happen.

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  78. 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.

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  80. Diploid - Supporting Rare Disease Diagnostics

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  82. F2G - The Rare Fungal Disease Company

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  84. 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.

  85. wewearstripes.com
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  86. #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.

  87. rarediseasesacademy.de
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  88. Startseite - Rare Diseases Academy 2021

  89. ern-lung.eu
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  90. 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

  91. rare-diseases.eu
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  92. 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

  93. rarediseaseday.org
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  94. 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.

  95. nirdp.org.uk
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  96. Northern Ireland Rare Disease Partnership

  97. radiorg.be
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  98. 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

  99. rda-forum.org
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  100. Rare Disease Action Forum | RDAF

  101. zogenix.com
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  102. 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.

  103. curecmt4j.org
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  104. CureCMT4J | Advancing Treatments for Rare Diseases

  105. rdodjournal.com
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  106. 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

  107. ramedis.de
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  108. 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

  109. rareve.com
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  110. 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…

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  111. ordindia.in
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  112. 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.

  113. mynormal.ca
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  114. My Normal | storytelling for rare disease health
    My Normal | storytelling for rare disease health
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  115. rdif.org.in
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  116. Home - Rare Diseases India Foundation

  117. allstripes.com
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  118. AllStripes - Be part of the solution for your rare disease
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  119. globalgenes.org
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  120. Allies in Rare Disease - Global Genes
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  121. rdna.ca
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  122. rDNA | Rare Disease Network of Alberta
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  123. rareopportunities.com
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  124. Welcome to Rare Opportunities in Primary Care, your source for information on primary care in rare diseases

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