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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.
swii.ch health | Rare Disease Patient Engagement Agency
Focused on rare diseases and specialty markets, we are a patient engagement agency serving pharmaceutical and biotech clients.
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...
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.
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.
Healx | Discovering new treatments for rare disease patients
We're an AI-powered, patient-inspired biotech, and we're breaking new ground in the discovery of new treatments for rare disease patients.
we care about rare disease patients | Sobi North America
Sobi is dedicated to developing and delivering innovative therapies to improve the lives of rare disease patients.
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
Rare Diseases International
Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all rare diseases
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Author: Suzanne Morris
My Normal | storytelling for rare disease health
My Normal | storytelling for rare disease health
Author: My Normal
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.
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
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.
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.
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
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.
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
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.
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nis4.com - NIS4® is designed to identify patients with NASH at a higher risk for disease progression
NIS4* is designed to identify patients with NASH at a higher risk for disease progression based on a composite of NAFLD activity score and fibrosis stage
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
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.
CENTOGENE - The Rare Disease Company
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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.
Rare Disease Foundation
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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.
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
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
TBTBGLOBAL - Helping the rare and cancer disease communities
We are TBTB Global a company dedicated to help other companies to improve their business and lifestyle of patients dealing with cancer and rare disease.
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 ...
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-e-CONNECT - RARE-e-CONNECT
Secure multidisciplinary collaboration and knowledge sharing on rare diseases. For Healthcare Professionals and patients within Cyprus and abroad, large repository of medical centres in Europe and other countries with verified expertise in rare disease groups and rare diseases, Patient life stories, Continuous Medical Education via webinars and automated newsfeeds from key medical databases to stay up to date with important developments and clinical trials in rare diseases.
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Race For 7 | 7000 Rare Diseases | 7000 meters
ORDI team committed to address the challenges of rare disease patients and their families is conducting 'Race for 7', an awareness run in Bengaluru on
#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
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Rare Patient Voice
Rare Patient Voice helps patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.
Epistasis Lab | Identifying the complex genetic architectures of disease
Identifying the complex genetic architectures of disease
Rare Patient News. Well Done. - Patient Worthy
PODCAST: WAIT, HOW DO YOU SPELL THAT? PATIENT WORTHY SERIES THE LATEST FROM PATIENT WORTHY OF INTEREST A New Opportunity for Narcolepsy Patients Rare Disease Clinical Trials Are Essential to Help Uncover Potential Patient Solutions: Spotlight on Classic Congenital Adrenal Hyperplasia (CAH) GET INVOLVED Make a difference, share your experiences and get paid. Opt-in & […]
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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
Sicklecell :: The Resource to the Sicklecell Disease Patient
The Resource to the Sicklecell Disease Patient
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 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.
ResApp Health | Digital healthcare for respiratory disease
ResApp Health is developing digital healthcare solutions to assist doctors and empower patients to diagnose and manage respiratory disease.
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.
UK ATTR Amyloidosis Research Association - Journal of Rare Diseases
Journal of Rare Diseases
Author: Jayden Ortiz
Biomarkers for Rare Diseases Summit 2021 | Digital Meeting
Diagnostic and therapeutic pathways for defined patient populations.
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
Personalized Support for Patients & Families Affected by Rare Disease
CareConnectPSS® is designed to support each patient’s unique journey to help you overcome challenges related to living with Fabry, Gaucher, Pompe, and MPS I disease. Learn more about the many support offerings & available resources.
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AiCure – The link between patients, disease and treatment.
The link between patients, disease and treatment.
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.
Todd Berner | Patient Advocacy
Todd Berner is a healthcare professional with a passion for patient advocacy, particularly when it comes to patient populations with rare diseases.
Author: Former Co-Chair
Keith McArthur – Author. Podcaster. Speaker. Rare Disease Dad.
Author. Podcaster. Speaker. Rare Disease Dad.
Rare and Undiagnosed Network
To empower rare & undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
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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
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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
EURenOmics - improving the lives of those with rare kidney disease
EURenOmics aims to predict the disease course, develop novel tools for more accurate diagnoses and new and better therapies for rare kidney diseases.
Rare Renal | The UK Kidney Association
It is often hard to find detailed information on rare diseases because they affect so few patients. Doctors may only treat a few patients with a rare disease in their whole career. This site aims to provide information and links to 27 different rare renal conditions and their current activity such as patient support groups and research. Please contact us if you are interested
PPAHS - Physician-Patient Alliance for Health & Safety
Physician-Patient Alliance for Health & Safety is a national advocacy force for addressing patient health and safety priorities that are shared by patients, physicians, regulators and industry.
Author: Michael Wong
Home - X4 Pharmaceuticals, Inc.
By targeting the CXCR4 pathway, we aim to restore healthy immunity in patients with a broad range of rare diseases.
Lyme Disease UK - Lyme disease charity for patient support and advice
Welcome to LDUK, a registered charity founded by Lyme disease patients and run by volunteers. We're the largest Lyme disease support network in the UK.
Author: Admin
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
Health Advocacy Summit
Empowering young adults with chronic and rare diseases through advocacy events and programs.
ERICA | The European Rare Disease Research Coordination and Support Action
ERICA , The European Rare Disease Research Coordination and Support Action
Cloud-R | Rare disease from a community to data | Italy
Cloud-r digital startup focuses on digital solutions and processes for the collection and analysis of observational data on rare diseases.
Catalyst: A Biopharmaceutical Company Focused on Rare Diseases
Our company is committed to developing novel, safe, and efficacious therapies to improve the lives of people with rare diseases.
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Střední odborná škola Olomouc spol. s r. o. | Střední vzdělání s maturitou
Nabízíme kvalitní studium s mnoha výhodami a možností uplatnění na různých pozicích ve veřejné správě i soukromém sektoru.
socialbee | Integration von Flüchtlingen in den Arbeitsmarkt
Non-profit Zeitarbeit Socialbee | nachhaltige Integration von Flüchtlingen in den Arbeitsmarkt | Mitarbeitersuche in München und Stuttgart
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Home - NGI
Pioneering breakthroughs in natural fertilisers & animal supplements, incl UGF 6-in-1... World's Best Instant Plant Booster for up to 26-63% more prolific growth!
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Perfect for all ages, there are so many things to do in Rockingham. Been before? It’s time to rediscover Rockingham’s secrets. Discover more on our website
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כל שירותי הדיגיטל במקום אחד » אל מדיה בניית אתרים ושיווק
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GenPower - daar krijg je energie van! | Verhuur en verkoop van aggregaten
Aggregaat huren of kopen? Genpower is dé specialist in Nederland. Met één telefoontje regelen wij alles voor u: 0184-601990!
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ELB | Εuropean Language Bridge
Το ELB παρέχει υπηρεσίες υψηλού επιπέδου με προοδευτική μεθοδολογία διδασκαλίας, με πλούσια και εκτεταμένη εμπειρία στην διαδικασία εκμάθησης γλωσσών. Η Αρετή Κορμά ανέλαβε εξ ολοκλήρου ως Διευθύντρια Σπουδών του σχολείου.
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Personal trainer aan huis | Sinds 2007 | Coronaproof trainen (Tip!)
Personal trainer aan huis | Jouw stok achter de deur | 13 jaar ervaring | Wij komen met alle spullen naar je toe, waar en wanneer jij wilt!→
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Kizuna Branding - Estratégia de marketing em Fortaleza.
Empresa de branded content, estratégia e branding em Fortaleza.
Home | Spring Water | Een bron van water.
Bij Spring Water Company hebben we een grote passie voor het zuiverste water, de beste natuurlijke dranken en mooie merken. We activeren de zintuigen met
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Officerstidningen - för Officersförbundets medlemmar
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Hukino – Hoop op een betere toekomst
Corpac Steel Products │ Global distributors of steel pipe
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Accueil - TAGI-Constructions
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