Rare Disease influencers and hashtags

Discover who to follow and where the Rare Disease conversation is taking place

Rare Disease Hashtags

The Future of Genomic Medicine VII
Healthcare Conferences | Topics: , , , , , ,

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 disease of the genome), newborn and fetal genomics. Furthermore, we will delve into the hot topics of pharmacogenomics, the microbiome, …

Congenital Anomanies | Disease Hashtags | Rare Diseases | Topics: , , , , , , ,

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.

Healthcare Tweet Chats | Topics:

#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 Disease Day. Created by Stephanie Fischer of PhRMA (@SDFatPhRMA), a rare disease patient.

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

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

Disease Hashtags | Rare Diseases | Respiratory | Topics: , , , ,

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

Disease Hashtags | Rare Diseases | Respiratory | Topics: , , , ,

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

Disease Hashtags | Multiple | Rare Diseases | Topics: ,

Sarcoidosis is an inflammatory disease characterized by the development and growth of tiny lumps of cells called granulomas. The granulomas can be found in almost any part of the body, but occur more commonly in the lungs, lymph nodes, eyes, skin, and liver.

Disease Hashtags | Neurological | Rare Diseases | Topics: ,

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:

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: , , ,

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: , , , ,

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: , ,

Myositis is the inflammation of the skeletal muscles.

Cardiovascular | Disease Hashtags | Rare Diseases | Topics: ,

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: , , , , ,

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

Disease Hashtags | Rare Diseases | Topics: , ,

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

Disease Hashtags | Multiple | Topics: , , , , ,

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

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Healthcare Social Media Newsletter

Heidi Allen - Healthcare social media consultant