January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
October is Gaucher Disease Awareness Month! The National Gaucher Foundation (NGF) has some wonderful resources that can come in handy for the Gaucher patient community. Let's take a look below!…
September 25th is International Ataxia Awareness Day! The National Ataxia Foundation (NAF) has great resources to help spread the word and show our solidarity for the Ataxia patient community; on…
September 24th is Familial Hypercholesterolemia (FH) Awareness Day! Let's take a closer look at FH, and how we can help make this day productive for the FH -- and rare…
July is Gastroschisis Awareness Month! Thanks to the great work of the Avery's Angels Gastroschisis Foundation, there are a number of ways and resources to make the most out of…
June is myasthenia gravis awareness month! Myasthenia gravis (MG) is characterized by weakness and rapid fatigue of any of the muscles under voluntary control. It's caused by a breakdown in…
May is Cystic Fibrosis (CF) awareness month! CF is one of the more devastating rare diseases in the community, often affecting children and young people. So let's be extra mindful…
May is Myositis Awareness Month! Myositis is the inflammation or swelling of the muscles. There are two primary kinds of myositis: Polymyositis, which causes muscle weakness, usually in the muscles closest…
Thursday May 16th is HAE Day, when we observes the hopes, struggles, and resilience of the Hereditary Angioedema (HAE) patient community! What is HAE? “Angio” means pertaining to blood vessels, and…
May is Cystinosis Awareness Month! During the month (and all year long!) we strive to bring together the cystinosis patient community and their families -- and the Cystinosis Research Network's…
When my family friend's new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming)…
Today is National Phenylketonuria (PKU) Awareness Day! The United States Senate only very recently voted to designate December 3rd as PKU Awareness Day, in 2012. So let's take a moment…
The first week of December is Crohn's & Colitis Awareness Week! Courtesy of the Crohn's & Colitis Foundation, there are a few things we can do as rare disease advocates to…
According to a story by reporter Nara Schoenberg from the Chicago Tribune, when Pidgeon Pagonis, then known as Jennifer Pagonis, was born in 1986, it didn't take long for Pidgeon's…
November 1st is Acromegaly Awareness Day! What is Acromegaly? Acromegaly is a hormonal disorder characterized by significant, abnormal growth, caused by an excess amount of growth hormone, or GH. GH is produced…
What can you do with half an hour? That’s the question that a new Canadian program asks. An online program called #30MinutesThatMatter gives Canadian patients an opportunity to share how…
October is Dysautonomia Awareness Month! Before we get into advocacy, let's touch on basic awareness... What is dysautonomia? Dysautonomia is the umbrella term that encompasses several different conditions that cause a…
October 1st is International Gaucher Day! What is Gaucher Disease? Gaucher disease is a lysosomal storage disorder in which the activity of the enzyme beta-glucocerebrosidase is incredibly low or non-existent.…
September is Achalasia Awareness Month! Achalasia may not be a disease you've heard about - so you've come to the right place! What is achalasia? Achalasia is a rare disorder that…
September is Krabbe Disease Awareness Month! Because a lot of times, these rare diseases are rarely talked about, it'll be useful to deep dive into the disease to learn more…
September is Ovarian Cancer Awareness Month! How much about it do you know? Let's take a deep-dive. Ovarian cancer is a type of cancer that forms in a woman’s ovary.…
September is Primary Biliary Cholangitis Awareness Month! What is PBC? Primary biliary cholangitis (PBC) is a chronic disease of the liver characterized by a slow, progressive damage to the bile ducts…
September is Histio Awareness Month! That "histio" refers to histiocytic disorders, which are are a group of diseases that occur when there is an over-production of white blood cells known…
September is National Ovarian Cancer Awareness Month. For Kelly Rice this represents an opportunity to spread awareness. It represents a dream to see a state lit in teal. Her effort…
September is Dystonia Awareness Month! Dystonia is a chronic movement disorder, existing in the same family as the more well-known Parkinson’s disease. Symptoms of dystonia are defined by involuntary muscle contractions which…
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