September 24 is Familial Hypercholesterolemia Awareness Day
source: pixabay.com

September 24 is Familial Hypercholesterolemia Awareness Day

September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…

Continue Reading September 24 is Familial Hypercholesterolemia Awareness Day
June 17 is World CDKL5 Day!
Source: Pixabay

June 17 is World CDKL5 Day!

At just two days old, Leita’s son Glyn started having infantile spasms. For the next sixteen years, Glyn’s seizures worsened. Leita also had two other children – twins named Asha…

Continue Reading June 17 is World CDKL5 Day!

Patient Story: Breaking the Stereotypes Around ME

According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Myalgic encephalomyelitis (ME),…

Continue Reading Patient Story: Breaking the Stereotypes Around ME

Don’t Miss National Eosinophil Awareness Week!

It's time to raise awareness for and celebrate the patient population that lives with eosinophilic disorders. From May 15th until the 21st, the American Partnership for Eosinophilic Disorders (APFED) is…

Continue Reading Don’t Miss National Eosinophil Awareness Week!
May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness
source: pixabay.com

May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness

According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…

Continue Reading May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness
Cornelia de Lange (CDLS) Syndrome Awareness day is May 14th and Support is Needed Now More Than Ever
source: pixabay.com

Cornelia de Lange (CDLS) Syndrome Awareness day is May 14th and Support is Needed Now More Than Ever

  It is believed that in 1916 a German doctor named Brachmann first identified a patient with symptoms of a disease later known as Cornelia de Lange syndrome. Then in…

Continue Reading Cornelia de Lange (CDLS) Syndrome Awareness day is May 14th and Support is Needed Now More Than Ever
International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness
source: pixabay.com

International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness

International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public…

Continue Reading International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness