Rare Disease influencers and hashtags

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Regular | Topics: awareness, health, Rare Disease

Disease Hashtags | Neurological | Rare Diseases | Topics: Neurological Disorders, Rare Disease

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

Disease Hashtags | Rare Diseases | Topics: Rare Disease

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

3rd Annual Sanford Rare Disease Symposium

Healthcare Conferences | Topics: CoRDS, global rare disease day, Rare Disease, rare disease research

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 for individuals affected by rare disorders. All are welcome! View the agenda and register (free!) today: https://www.signup4.net/Public/ap.aspx?EID=SANF28E

RAREVoice Awards

Healthcare Conferences | Topics: FDASIA Legislation, Patient Advocates for Rare Disease, PDUFA Legislation, Rare Disease, Rare Disease Legislative Advocates

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 disease. http://www.rareadvocates.org

Disease Hashtags | Musculoskeletal | Rare Diseases | Topics: Dermatomyositis, Polymyositis, Rare Disease

Myositis is the inflammation of the skeletal muscles.

Cardiovascular | Disease Hashtags | Rare Diseases | Topics: Fibromuscular Dysplasia, Rare Disease

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

Blood | Disease Hashtags | Rare Diseases | Topics: autoimmune disease, blood disease, cryoglobulinemia, cryoglobulinemia vasculitis, hepatitis C, Rare Disease

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

Healthcare Conferences | Topics: bio pharma, genetics, Rare Disease

Disease Hashtags | Rare Diseases | Topics: Rare Disease, vasculitides, vasculitis

Vasculitis is an inflammation of the blood vessels.  It causes changes in the walls of the blood vessels, including thickening, weakening, narrowing and scarring.

Disease Hashtags | Neurological | Rare Diseases | Topics: Ataxia, Rare Disease

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

Disease Hashtags | Multiple | Topics: Bruise, Double-Jointedness, Ehlers Danlos Syndrome, Joint Pain, Loose Joints, Rare Disease

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

Disease Hashtags | Neurological | Topics: Chiari Malformation, Rare Disease, rare diseases

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.

Healthcare Tweet Chats | Topics: orphan diseases, orphan drugs, Rare Disease, rare disease news, rare disease patient groups, rare disease research

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 together rare disease patient groups, but also other key stakeholders to discuss topics around #raredisease

Blood | Disease Hashtags | Rare Diseases | Regular | Topics: autoimmune disease, blood disease, cryoglobulinemia, cryoglobulinemia vasculitis, hepatitis C, patient, Rare Disease

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

Disease Hashtags | Ill Defined | Topics: growth, Rare Disease

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 family.

Disease Hashtags | Ill Defined | Rare Diseases | Topics: Rare Disease

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