October is Gaucher Disease Awareness Month!
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!…
Spread the Word about International Ataxia Awareness Day
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 Awareness Day!
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…
Celebrate Gastroschisis Awareness Month with Avery’s Angels Foundation
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…
Let’s Talk Myasthenia Gravis During Awarness Month
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…
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Let’s Make Cystic Fibrosis Awareness Month Work for Us!
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…
Making the Most out of Myositis Awareness Month!
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…
Walk the Walk During HAE Awareness Day
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…
Join the Cystinosis Community at the 2019 Family Conference!
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…
4 Facts You Need to Know About Cystic Fibrosis
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)…
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Explore Some Ways to Show Your Support on Phenylketonuria Awareness Day
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…
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Help Make #IBDvisible During Crohn’s and Colitis Awareness Week!
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…
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Intersex Activists Hope to End Childhood Surgeries
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…
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Take a Walk – and a Selfie! – in Your Shoes for Acromegaly Awareness Day
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…
Minutes of Your Time: How A Canadian Program is Changing Cancer Medicine
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…
How to Make October Work for Dysautonomia Awareness
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…
Join the EGA in Raising Awareness for International Gaucher Day!
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!
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…
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What is Krabbe Disease? A Primer During Awareness Month!
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…
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September is Ovarian Cancer Awareness Month!
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.…
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September is Primary Biliary Cholangitis (PBC) Awareness Month!
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…
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Nine Things you Can do this S.E.P.T.E.M.B.E.R. for Histio Awareness Month
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…
State of Teal Campaign Shines a Light for Ovarian Cancer Awareness
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…
Go to a Zoo for Dystonia Awareness Month!
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…
Take a Walk for Stevens-Johnson Syndrome Awareness!
August is Stevens-Johnson Syndrome (SJS) Awareness Month! In honor of the SJS community, Friday August 31st has been designated an awareness day. What is Stevens-Johnson Syndrome? SJS is a rare, serious…
