Many rare diseases face issues when it comes to awareness, we know this. Low patient populations, minimal research, and little knowledge all contribute to this problem. One father aims to…
September is Charcot-Marie-Tooth disease (CMT) Awareness Month! The Charcot-Marie-Tooth Disease Association has put together 5 different ways you can help spread awareness of this rare disease this month. The Association…
The month of August is recognized as Psoriasis Awareness Month, a time of year set aside to help spread awareness about the disease among the general public and in the…
July is recognized as Juvenile Idiopathic Arthritis Awareness Month. Though arthritis is often considered an illness that is associated with old age, it is estimated that around 300,000 children in…
The month of April is recognized as Sjögren's Awareness Month, a time for spreading awareness about the autoimmune disease Sjögren's syndrome in the medical community and among the general public.…
Running a foundation for a rare disease isn’t always an easy thing. I receive emails daily asking me for information about Twin Anemia Polycythemia Sequence, a rare disease of monochorionic twins affecting just…
The month of March is recognized as Cerebral Palsy Awareness Month, a time that is dedicated to spreading awareness among the general public and the medical community about cerebral palsy,…
Monty Hui, an eight-year-old boy from Australia, and his family have spoken to SBS News about living with a rare disease and the obstacles faced in diagnosis and recognition. He…
Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease…
Learning about rare diseases is one of the first steps towards advocacy. If you or a loved one are affected by cold agglutinin disease (CAD), you may want to get…
Vance Robinson was diagnosed with inclusion body myositis over ten years ago, and since then he has worked to raise money and awareness. Pre-pandemic, Vance would throw the first pitch…
February is recognized as Marfan Syndrome Awareness Month, which is an event intended to help spread awareness about Marfan syndrome among the general public and in the medical field. This…
Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called…
Grant Bonebrake was diagnosed with Alport syndrome at age 12. Since then, he has gone on to advocate for not only Alport syndrome patients, but the rare disease community as…
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…
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