“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
Written by Rod Cisneros Like many people, I keep a daily journal. I use it to document my everyday thoughts and I even include advice for family members who might…
Cooking and eating together is a great way to build closer bonds and spend time with those we love. In Malaysia, it's a large part of the culture, as there…
According to a recent article, a mother was able to see her baby daughter clearly after being diagnosed with the rare Stargardt disease. Stargardt Disease Stargardt disease is an inherited…
In August 2021 News Center Maine ran an article introducing former British army Major Chris Brannigan. Brannigan, forty-one years old, was prepared to do anything to help his daughter Hasti,…
According to a story from Religion News Service, Gurjot 'Jo' Kaur has developed a reputation as a potent civil rights lawyer. Her career was motivated by experiences such as ableism…
In 2019, Nathan James Bryan was 31 years old. He enjoyed drinking beer with his friends, working out, and spending time with his family. In fact, he had been staying…
According to a story from echolive.ie, ten year old Adam Terry from Cork, Ireland, has directly appealed to Micheal Martin, the Taoiseach (or prime minister) of the country in order…
A lack of awareness is a problem that many rare diseases face. Small patient populations, limited research, and other factors all play a role in this issue. Luckily, there are…
At two years old, Charlotte Wilson, known affectionately as Lottie, has such a bright and happy smile. Her family, including her mother Lisa, feels lucky to still have her…
Now that it's officially October, it's time to celebrate my personal favorite holiday - Halloween. That means haunted houses, scary movies, creative costumes, and spooky decorations. One Transcona family is…
Although Jackson, age 62, has had CMT for ten years, he only divulged his illness this month. According to an article on eathis.com, Jackson chose a recently aired segment of…
Explaining something as complicated as a rare disease to a child can be difficult. That's why Alexion Pharmaceuticals created a books series titled "Inspired By." The series is a way…
A rare disease diagnosis can change your life; Mari Jackson knows this firsthand. She received a surprise diagnosis of pulmonary arterial hypertension (PAH) at age 48. Her symptoms began suddenly,…
At just 18 weeks old, Ivy Gaines, who was born prematurely, was diagnosed with spina bifida. His parents, Robert and Brittney, have worked tirelessly to ensure that Ivy is receiving…
Losing a loved one can be life-shattering. Ginny Toman knows this, as she lost her father to progressive supranuclear palsy (PSP) in 2019. Since then, she has learned how to…
Kristin woke up the morning of her 19th birthday with a startling realization: she was unable to speak. It was hard to describe the feeling, but when she tried to…
It's a beautiful thing when a community pulls together to support one of its members. This is exactly what the Madeira community is doing for 16-year-old Diego Ramirez. He recently…
Lytle, Texas is a small town located outside of San Antonio. Recently, the entire community came together to support a young boy living with autosomal recessive polycystic kidney disease (ARPKD).…
Alan Jackson has been a big part of the country music scene for a long time, with songs like Remember When and Livin' On Love. Recently, he revealed to his…
Dave and Kendra Riley have a beautiful family: them and their daughters Eva, Kiera, and Olivia. Yet the family has faced some scary and difficult obstacles over the last…
Having a rare disease can feel isolating. Many people have never even heard of your condition, much less know anything about it. This is even a problem with doctors. Despite…
It's no secret that COVID-19 can cause lasting effects on those it infects. Over the course of the pandemic, we've learned a lot more about this virus, including its connection…
In 1992, Elsa Burgos and her husband, living in Puerto Rico at the time, welcomed a new addition to their lives: their daughter Nicole. The pair were thrilled to have…
September will soon come to a close, but did you know that this month is also Ovarian Cancer Awareness Month? According to a story from MSN, Michelle Barrenechea, an EMT…
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