Rare Disease Insights

Rare Disease Insights

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Latest Post

No Blog Post – 02/08

February 10, 2026

I was out of town this past weekend, visiting family; however, there will be a regularly scheduled post coming out this weekend! Read.

Previous Posts

No Blog Post – 02/08

February 10, 2026
Dextrocardia with Situs Inversus – 1 in 10,000 to 1 in 35,000 Live Births

February 1, 2026
Williams Syndrome – 1 in every 7,500 to 10,000 People Worldwide

January 25, 2026
Alport Syndrome – 30,000 to 60,000 Individuals Affected Globally

January 18, 2026
Ichthyosis – Severe Cases Affecting 1 in 100,000

January 11, 2026
Mastocytosis – 28 Per 100,000 People

January 3, 2026
Botulism – 110-200 Cases Per Year in the United States

December 21, 2025
Achondroplasia (ACH) – 1 in 20,000 to 30,000 Births

December 14, 2025
Spina Bifida (SB) – 1,500 and 2,000 Babies Per 4 Million Births

December 7, 2025
Acromegaly – 50 to 70 People Per Million

November 30, 2025
Pfeiffer Syndrome – 1/100,000 People

November 23, 2025
Hutchinson-Gilford Progeria Syndrome (Progeria/HGPS) – 150-250 Cases Worldwide

November 16, 2025
Pediatric Crohn’s Disease – 0.7% of the US Population

November 9, 2025
Cornelia de Lange Syndrome (CdLS) – 1 in 10,000 to 30,000 Live Births

November 2, 2025
Amyotrophic Lateral Sclerosis (ALS) – 4-6 Cases per 100,000 People

October 26, 2025
Paget’s Disease (of the Bone) – 1-2% of the General U.S. Population Affected

October 19, 2025
Glioblastoma (GBM) – 3/100,000 People Per Year Affected

October 12, 2025
Mucopolysaccharidosis Type I (MPS 1) – 1 in 25,000 Births

October 5, 2025
Hemophilia A – 1 in 5,000 Male Births Worldwide

September 29, 2025
Vogt-Koyanagi-Harada Disease – Fewer Than 50,000 People Affected in the U.S.

September 21, 2025
Congenital Insensitivity to Pain (CIP) – 1 in a Million People

September 14, 2025
Lysosomal Storage Disorders (LSDs) – 1/5,000 Live Births per Year

September 7, 2025
Usher Syndrome – Three to Ten in 100,000 People Worldwide

August 31, 2025
Prader-Willi Syndrome (PWS) – 350,000-400,000 Individuals Affected Worldwide

August 24, 2025
No Blog Post – 08/17

August 20, 2025
Epilepsy with Myoclonic-Atonic Seizures (EMAtS) – 1–2% of Epilepsy Cases

August 11, 2025
Glycogen Storage Disease Type I (GSDI) – 1 in 100,000 Births

August 3, 2025
Fragile X Syndrome – 1 in 4,000 Males and 1 in 8,000 Females Affected

July 27, 2025
Evans Syndrome – Less Than 5,000 People Affected

July 20, 2025
Von Hippel-Lindau Disease (VHL) – 1/31,000 People Affected

July 12, 2025
No Blog Post – 07/06

July 8, 2025
Mesothelioma – 0.3% of All Cancer Diagnoses in the U.S.

June 29, 2025
Oculocutaneous Albinism – 1/20,000 People Worldwide

June 22, 2025
No Blog Post – 6/15

June 18, 2025
Angelman Syndrome – 1 in 12,000-20,000 People Affected

June 8, 2025
Ehlers Danlos Syndrome – 1 in 5,000 Individuals Affected Worldwide

June 1, 2025
Buerger’s Disease – 12.6-20/100,000 People Affected

May 26, 2025
Turner Syndrome – 0.05-0.04% Females Worldwide

May 18, 2025
Neurofibromatosis 1 (NF1) – 1/3,000 Births

May 4, 2025
Phenylketonuria (PKU) – 1/19,000 People

April 27, 2025
Dercum’s Disease – Prevalence Unknown

April 20, 2025
Dravet Syndrome (DS) – 0.0064% of the People in the United States

April 13, 2025
Gaucher Disease (GD) – 1/100,000 People Affected

April 6, 2025
Refractory Celiac Disease (RCD) – 20,000 People in the U.S. Affected

March 29, 2025
Fibrodysplasia Ossificans Progressiva (FOP) – 1/1,000,000 People Affected

March 23, 2025
Migraines – Affecting… Me!

March 19, 2025
Niemann-Pick Disease Type C (NPC) – 1 Case Per Every 120,000 Live Births

March 9, 2025
Cystic Fibrosis (CF) – 40,000 Americans Affected

February 27, 2025
Huntington’s Disease (HD) – 30,000 People in the U.S. Affected

February 23, 2025
Cri du Chat Syndrome (CdCS) – 1/15,000 to 1/50,000 Births Per Year

February 16, 2025
Duchenne Muscular Dystrophy (DMD) – 1 Per Every 5,000 Male Births

February 9, 2025
Tay-Sachs Disease (TSD) – 1 in Every 320,000 Babies Born in the U.S.

February 2, 2025
Paget’s Disease of the Breast – 1-4% of Women with Breast Cancer

January 24, 2025
Sickle Cell Disease (SCD) – 1 in 365 African American Babies per Year

January 19, 2025
Atypical Hemolytic Uremic Syndrome (aHUS) – 2 per every 1 million people

January 12, 2025
Fabry Disease – 1/40,000 Males

January 4, 2025
X-Linked Lymphoproliferative Syndrome (XLP) – 1 Out of Every 1 Million Boys

December 27, 2024
Krabbe Disease/Globoid Cell Leukodystrophy – 1 in 250,000 Americans

December 22, 2024
FPIES – 0.51% of U.S. Children Affected

December 13, 2024
Why Rare Disease Insights?

December 8, 2024