The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
When it comes to rare disease research and drug development, there is one crucial part of the equation: patient input. After all, how can companies ensure that they are meeting…
October is Rett Syndrome Awareness Month, and even though the pandemic has changed the way that we celebrate it, there are plenty of ways to get involved! Rettsyndrome.org has organized…
The third week of September is recognized annually as Mitochondrial Disease Awareness Week. This global event is held in order to increase awareness of mitochondrial disease in the medical community…
Sick of being locked inside with nothing to do? Well, this is just your luck! On July 22, you can celebrate the 6th annual World Brain Day from the…
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…
Read the first part of Lisa's story here. Lisa’s two direct and indirect bypass surgeries were successful. She now had seven times more blood flow to her brain than she…
At age twenty one, Lisa was about to graduate college and had a promising future career in front of her. All that was left was graduation itself. The week before…
November is Pancreatic Cancer Awareness Month. The American Cancer Society’s estimates for pancreatic cancer in the United States for 2018 are: About 55,440 people (29,200 men and 26,240 women) will…
October is Kabuki Syndrome Awareness Month! And it's important to connect with other people in the community; there's always strength in numbers. So let's learn a little more about Kabuki syndrome…
Lindsey Sutton showed signs of familial chylomicronemia syndrome as early as five weeks old. Sutton is now 28 years old. Because of her condition, she must adhere to a very…
At 14 years old, Bede Marciari has experienced and missed out on a great number of things. For many people, this is just part of growing up. In Bede’s case,…
Linda Ramsey had a son named Kevin. In the beginning everything was okay, and Kevin grew normally for a short time. After a few months, his experienced difficulty swallowing. He…
According to a report by CTV News of Calgary, a new trial program is attempting to make transitions easier for people living with chronic conditions. Specifically, the program hopes to…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
A new clinical trial aims to be the first treatment for mitochondrial disease to be granted FDA approval. Whether or not the trial results in a landmark treatment, it is…
February is Eisenmenger Syndrome Awareness month. Eisenmenger syndrome is very rare and devastating, so it deserves our attention. Let's get to know a little more about this heart condition. Eisenmenger syndrome…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
Love them, hate them, or love to hate them - celebrities are a big part of our culture. They sell us clothes, perfumes, lifestyles - and some we even elect…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
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