Rare Disease Hashtags

Hashtag Type Topics and Description
#2014GGSummitHealthcare ConferencesGlobal Genes Patient Advocacy Summit
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Global Genes – Allies in Rare Disease: 2014 Rare Disease Patient Advocacy Summit will offer practical advice, case studies, and networking opportunities as we learn from one another. The goal is to have patient advocates walk away with a better … Continued

#AtaxiaDisease Hashtags,

Ataxia describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects.

#BattenDiseaseDisease Hashtags, ,

Batten Disease is a neurodegenerative genetic condition characterized by progressive mental and motor deterioration, seizures, and early death.

#ChiariDisease Hashtags, ,

Chiari Malformation is a condition in which brain tissue protrudes into the spinal canal as a result of a small or misshapen skull, causing pressure on the brain and forcing it downward.

#CoRDSchatHealthcare Tweet Chats, , , , ,

CoRDSchat is a live Twitter-driven event which takes place the last Friday of every month (Noon CST) CoRDSchat was founded by Liz Donohue, Director of the CoRDS (Coordination of Rare Diseases at Sanford) @SanfordCoRDS in February 2012. CoRDS chat brings … Continued

#CowdensSyndromeDisease Hashtags, , , , , , ,

Cowden’s Syndrome, also known as Multiple Hamartoma Syndrome, is a disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers.

#CryoglobulinemiaDisease Hashtags, , , , ,

Cryoglobulinemia is the presence of abnormal proteins in the blood. These abnormal proteins become thick or gel-like in cold temperatures.

#CryoGroupDisease Hashtags, Regular, , , , , ,

Cryoglobulinemia is the presence of abnormal proteins in the blood. These abnormal proteins become thick or gel-like in cold temperatures.

#EDSDisease Hashtags, , , , ,

Ehlers-Danlos Syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels.

#FMDDisease Hashtags,

Fibromuscular Dysplasia is the abnormal development or growth of cells in the walls of arteries that can cause the vessels to narrow or bulge.

#FOGM14Healthcare ConferencesThe Future of Genomic Medicine VII
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The 7th Future of Genomic Medicine conference will be the next iteration of taking genomic knowledge to transform the daily practice of medicine. This year we will be paying particular attention to genomics of undiagnosed and rare diseases, cancer (a … Continued

#GPFAD2013Disease Hashtags, , , ,

Pulmonary Fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs.

#MERSDisease Hashtags, , ,

Middle East Respiratory Syndrome is viral respiratory illness first reported in Saudi Arabia in 2012. It is caused by a coronavirus called MERS-CoV. Most people who have been confirmed to have MERS-CoV infection developed severe acute respiratory illness. They had … Continued

#MyositisDisease Hashtags, ,

Myositis is the inflammation of the skeletal muscles.

#PedInno14Healthcare ConferencesBoston Children's Hospital's Global Pediatric Innovation Summit + Awards 2014
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Taking a worldwide perspective, #PedInno14 is designed to address unmet needs, solve problems and seize opportunities in pediatric health care. Join a vibrant mix of thought leaders including clinicians, health care leaders, venture capitalists, policy makers, payers and other stakeholders … Continued

#ProgeriaDisease Hashtags,

Progeria is a rare condition that is remarkable because its symptoms strongly resemble normal human aging, but occur in young children. It usually is not passed down through families. Rarely is it seen in more than one child in a … Continued

#PulmonaryFibrosisDisease Hashtags, , , ,

Pulmonary Fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs.

#rareACTIONRegular, ,
#RareDiseaseDisease Hashtags

A Rare Disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.

#RareDiseaseDayDisease Hashtags

A Rare Disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.

#rarePOVHealthcare Tweet Chats

#RarePOV was created for an inaugural Tweetchat on rare disease in October 2013. A discussion question will be posed every Monday. The next Tweetchat will be in late January/early February to share resources & activities in advance of International Rare … Continued

#RARESummitHealthcare Conferences, ,
#RAREVoiceHealthcare ConferencesRAREVoice Awards
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Rare Disease Legislative RAREVoice Awards: recognizing the generous contributions of advocates, driving legislative processes for rare disease legislation and policy. Advocates are acknowledged for their enthusiasm and fight for science, hope and life saving treatments centered around rare and genetic … Continued

#RettSyndromeDisease Hashtags,

Rett Syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use.

#SanfordRDDHealthcare Conferences3rd Annual Sanford Rare Disease Symposium
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3rd Annual Sanford Rare Disease Symposium in honor of Global Rare Disease Day. Feb. 28 – Mar. 1, 2013. The Sanford Rare Disease Symposium features scientists, healthcare providers, and patient advocates from around the nation who work to improve care … Continued


Digital Scholar Initiative - University of Southern California
Mayo Clinic Transform Symposium 2014