Blog | Rare Disease Radar

Jan 43 min read

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...

3,579 views0 comments

Dec 17, 20232 min read

Addison's Disease

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

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Dec 2, 20232 min read

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...

5,913 views0 comments

Dec 2, 20232 min read

Lyme Disease

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

7,077 views0 comments

Nov 27, 20231 min read

Felty Syndrome

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

5,680 views0 comments

Oct 22, 20232 min read

Chediak-Higashi Syndrome

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

6,512 views0 comments

Sep 11, 20232 min read

Duchenne Muscular Dystrophy

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

3,604 views0 comments

Aug 7, 20232 min read

Ehlers-Danlos Syndrome

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

4,521 views0 comments

Jul 3, 20232 min read

Amyotrophic Lateral Sclerosis (ALS)

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

5,126 views0 comments

Jun 29, 20232 min read

Hemophilia

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

3,804 views0 comments

May 14, 20232 min read

Multiple Sclerosis - Hannah's Version

Multiple Sclerosis (MS) is an unpredictable disease of the central nervous system that can range from relatively benign to somewhat...

4,414 views0 comments

Apr 18, 20231 min read

We're Back!

Hey guys!! Apologies for the hiatus, we’ve been working on a local mission to spread awareness for the community. Throughout the East...

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Mar 18, 20231 min read

Sickle Cell Disease

Sickle cell disease (SCD) is a genetic disorder that affects the shape and function of red blood cells. It is a condition that primarily...

4,503 views0 comments

Feb 19, 20232 min read

Creutzfeldt-Jakob Disease

Creutzfeldt-Jakob disease (CJD) is a rare and devastating neurodegenerative disorder that belongs to a group of disorders known as...

5,601 views0 comments

Jan 16, 20233 min read

Bringing Understanding Through Media: A Review of Books, Documentaries, and More about Rare Diseases

Living with a rare disease can be a challenging experience, but it's important to remember that you're not alone. In recent years, a...

896 views0 comments

Dec 18, 20222 min read

Cystic Fibrosis

Cystic fibrosis (CF) is a genetic disorder that affects the respiratory and digestive systems, causing a buildup of thick, sticky mucus...

2,224 views0 comments

Feb 23, 20222 min read

Navigating the Journey of a Rare Disease: Strategies for Coping and Advocating

Living with a rare disease can be a unique and rewarding experience. While it may come with challenges and obstacles, there are many ways...

929 views0 comments