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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
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Author: Suzanne Morris
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.
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...
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
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
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 ...
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.
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.
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.
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.
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.
#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.
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.
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
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.
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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
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 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 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
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.
Author: Super User
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.
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.
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
Life of Wonders
Homepage von Life of Wonder's Golden Retriever
Author: A Huser
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
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.
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.
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!
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.
Keith McArthur – Author. Podcaster. Speaker. Rare Disease Dad.
Author. Podcaster. Speaker. Rare Disease Dad.
Nadi Loban | you will remember the most wonderful moments of your life
you will remember the most wonderful moments of your life
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
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.
What else meupku.wordpress.com alternative websites
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
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.
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
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.
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
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.
Wisconsin RARE
Wisconsin Rare is a coalition of rare disease stakeholders formed to organize the state's recognition of Rare Disease Day. Collaborate with us February 2017.
Author: Ginaszajnuk Com
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
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
Rare Disease Surveillance » Australian Paediatric Surveillance Unit
The Australian Paediatric Surveillance Unit (APSU) conducts national surveillance of rare uncommon diseases in childhood.
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
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.
SINGSUNG PTE LTD – Life’s Wonderful
Life's Wonderful
Sarepta Therapeutics | Biopharmaceutical Company for Rare Diseases
We are focused on the development of precision genetic medicines to treat rare neuromuscular and central nervous system diseases. Learn more about Sarepta.
Aeglea BioTherapeutics | Rare Metabolic Disease | Home
Aeglea BioTherapeutics is a clinical stage company developing enzyme therapies for rare metabolic diseases like Arginase 1 Deficiency and Homocystinuria.
Sarepta Therapeutics | Biopharmaceutical Company for Rare Diseases
We are focused on the development of precision genetic medicines to treat rare neuromuscular and central nervous system diseases. Learn more about Sarepta.
Mendelian: Fixing Diagnosis for Rare Diseases | mendelian.co
Mendelian solutions include the most advanced search engine for Rare Diseases, at home genetic testing, and the latest technology for clinics, and pharma companies.
Author: Mendelian Co
Sarepta Therapeutics | Biopharmaceutical Company for Rare Diseases
We are focused on the development of precision genetic medicines to treat rare neuromuscular and central nervous system diseases. Learn more about Sarepta.
Other websites similar as meupku.wordpress.com
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.
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.
Disturbingly Delicious - The Wonderful Taste of Life
The Wonderful Taste of Life
Author: Diana
Romagna Travel - Travel Is A Wonder Of Life
Travel Is A Wonder Of Life
Author: Stacy
Carbolena Web | for your wonderful BBQ life
for your wonderful BBQ life
Steve Waugh Foundation | Rare Disease Foundation Australia
Steve Waugh Foundation's mission is to enhance the lives of children and families affected by a rare disease. Grants and fundraising assistance available.
rclr – Musings & Wonderings at Mid-Life
Musings & Wonderings at Mid-Life
Author: Rclr
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
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.
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
Ashfield Stone | Rare and wonderful native stone of the Berkshires for landscapes and fine interiors.
Rare and wonderful native stone of the Berkshires for landscapes and fine interiors.
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100% Feng Shui – Blog van Feng Shui Master Wena Brussaard, leerling van Lillian Too
Blog van Feng Shui Master Wena Brussaard, leerling van Lillian Too
Author: Wena Brussaard
Foodologie – A Blog about Balancing Health with a Constant Desire to Eat Cake
A Blog about Balancing Health with a Constant Desire to Eat Cake
Baydreamer – ~Life in poetry, memoir, and short stories~
~Life in poetry, memoir, and short stories~
Author: Baydreamer
Compartiendo la Palabra – Exaltando a Jesucristo, Exponiendo las Sagradas Escrituras, Extendiendo la Verdad de Dios
Exaltando a Jesucristo, Exponiendo las Sagradas Escrituras, Extendiendo la Verdad de Dios
Author: Por Pastor Manuel
Jolanda Beuving's Blog – Van Wereldkampioen naar Fit Mom
Van Wereldkampioen naar Fit Mom
Author: Jolandabeuving @ Justbelieve
Deliciously Sarah – Get baking and have fun!
Get baking and have fun!
Author: Deliciouslysarah
ARMONIA MAGAZINE – USA – Locul in care te intalnesti cu CREDINTA.
Locul in care te intalnesti cu CREDINTA.
Author: George
Ingwerlatte mit Sahne. – Ich will jeden Satz auch so meinen!
Ich will jeden Satz auch so meinen!
Author: Ingwerlattemitsahne
Math Help from Arithmetic through Calculus and beyond
Author: Mathispower
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Night Nursing Nuances – Ramblings of a Nocturnal Nurse
Ramblings of a Nocturnal Nurse
Author: NurseDrizzles
Life as I know it… | a magical journey in life… towards love, towards ****…
a magical journey in life... towards love, towards ****...
Author: Genesdb
Mesh Body Addicts | SL's Mesh Body Blog
SL's Mesh Body Blog
Author: Mesh Body Addicts
FlixChatter Film Blog – Let's Chat Movies!
Let's Chat Movies!
Author: Ruth
#1minuteCPD – Improve your digital skills one minute at a time
Improve your digital skills one minute at a time
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Mr. Presecan – Cea mai interesanta persoana plictisitoare din lume
Cea mai interesanta persoana plictisitoare din lume
Author: Grpresecan
Le dragon galactique – Blog culturel & de science-fiction
Blog culturel & de science-fiction
Author: Par Tigger Lilly
DE CHARCO EN CHARCO – Moda, decoración, ocio, familia, cultura, recetas… ¡todo lo que te puede interesar! ¿Saltamos?
Moda, decoración, ocio, familia, cultura, recetas... ¡todo lo que te puede interesar! ¿Saltamos?
Bokdivisionen – – böcker, läsning och min bokläsning
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Author: Av bokdivisionen
Male on male spanking stories – by Charles Hamilton the Second
by Charles Hamilton the Second
Author: Charleshamiltonthesecond
Vidya Hanbal – An attempt to put my humble thoughts on the paper
An attempt to put my humble thoughts on the paper
Author: Vidya Shankara
SHEILA RENEE PARKER | Paranormal Author, Artist & Empath. Follow Sheila on Twitter, Facebook & Instagram! @sheilareneeparker
Paranormal Author, Artist & Empath. Follow Sheila on Twitter, Facebook & Instagram! @sheilareneeparker
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boho embroidery
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Writer of children's literature, short stories and poetry
Deb's World – A blog about midlife, travel, adventure – and all things in between
A blog about midlife, travel, adventure - and all things in between
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Minima Muse – Kreativer Konsumverzicht im kollektiven Selbstversuch
Kreativer Konsumverzicht im kollektiven Selbstversuch
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software for scholars | Useful computer applications for your intellectual work
Useful computer applications for your intellectual work
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PK te gast bij andere podcasts | doorzie
De afgelopen jaren was Patrick Kicken te gast bij meer dan 100 (!) podcasts van andere makers, om het fenomeen podcasts te promoten, zijn eigen podcasts en o.a. te praten over zijn geliefde onderwe…
Author: Doorzie
Nos ancêtres – Faire revivre nos ancêtres
Faire revivre nos ancêtres
Une liseuse & des polices – Quelles polices installer sur une liseuse ?
Quelles polices installer sur une liseuse ?
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Soul Symphonies – My Heart Perched On Verse
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