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Your Story Matters.

Welcome to the Rare Disease Community! We are glad to have you visit. Rare Disease Radar is a blog where different rare diseases are discussed, as well as new developments in the rare disease world. This blog is a way to empower this community to learn more about different rare diseases and ways to alter policy and save lives.

Recent Posts

Jan 4

Access Denied: My Battle with Gastroparesis and the High Price of Essential Medication - Grace Shults

I have been chronically ill since I was 16 years old. As a now 23-year-old young woman, I was not prepared for the many burdens that come...

Dec 17, 2023

Addison's Disease

Addison's disease is characterized by insufficient production of the steroid hormones cortisol and aldosterone in the outer layers of the...

Dec 2, 2023

Grace's Experience With Lyme Disease

Good morning. My name is Grace Shults. I am 22-years-old and I have been dealing with Lyme disease and co-infections since I was...

Dec 2, 2023

Lyme Disease

Lyme disease, a tick-borne illness caused by the bacterium Borrelia burgdorferi and, less commonly, Borrelia mayonii, is the most...

Nov 27, 2023

Felty Syndrome

Felty Syndrome is a rare autoimmune disorder, primarily associated with chronic rheumatoid arthritis (RA). It is characterized by RA, an...

Oct 22, 2023

Chediak-Higashi Syndrome

Chediak-Higashi Syndrome (CHS) is a rare autosomal recessive disorder characterized by the body's inability to regulate certain cellular...

Sep 11, 2023

Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy (DMD) is a severe genetic disorder primarily affecting boys, characterized by progressive muscle degeneration...

Aug 7, 2023

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is a group of disorders affecting the connective tissues—proteins that provide support to skin, bones, blood...

Jul 3, 2023

Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a progressive neurodegenerative disease. It ravages the...

Jun 29, 2023

Hemophilia

Hemophilia is a rare, genetic bleeding disorder in which the blood lacks sufficient clotting factors, making it difficult for bleeding to...

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