Written by Dawn Laney, MS, CDC, CCRC The journey to a Fabry disease diagnosis is rarely a clear, straight path. Fabry can mimic more common health issues and lead patients…
Written by: Ashley Walker Like many couples, my husband Johnny and I felt that the birth of our twin sons would mark the beginning of our family’s story. We certainly…
The very first HAE symptom I had brought me to the operating table. Unnecessarily. It was summer, with holidays and grandmother's birthday party- a big family reunion in the garden.…
HAE Junior’s drawing exhibition unveiled the dreams, wishes, and ambitions of children & teenagers living with hereditary angioedema (HAE). The patient organization HAE Junior organized a drawing exhibition named We…
In an innovative collaboration, the TAPS Support Foundation and the Fetal Therapy team from the Leiden University Medical Center announced today a new joint initiative – The Twin Talks Webinar…
Ahead of Cystic Fibrosis Week in the UK, 37-year-old Marc Cotterill, who lives with the disease, has given a video presentation to the European Cystic Fibrosis Conference on the theme…
Written by Kevin Schnurr A renal patient seeks clarity amidst ongoing, conflicting reports. It’s not every day I’m constantly reminded of my status as someone post-organ transplant, but…
Cystic fibrosis patients around the world are fighting to gain access to a range of drugs known as CFTR modulator therapies that could have a hugely beneficial impact on their…
Click here for part 1! At this point my joint pain was severely impacting my quality of life, so I looked for other sources of help. I joined a…
The story of my disease journey will be very familiar to many patients around the world. I was born and raised in a third world country where quality medical care…
This is part 2 of this story, click here to read part 1! Michelle had taken her daughter to see a geneticist who promptly diagnosed her with achondroplasia. He ordered…
Life as we know it has been shut down and completely changed for over a year. When the global pandemic struck, our world was also completely turned upside down. My…
When is hearing loss a good thing to discover in a child? It sounds like the beginning of a “dad joke.” The answer and consequences are real, and in the…
Written by Anis Mohd Nor I first became a mother in 2017. The pregnancy was a bumpy one - while I felt blessed to be pregnant after several years of…
Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life. As you…
By: Malika Abrams I was eight years old when I found out that I was sick. After spending a beautiful summer day at the community pool with my parents, brothers,…
Note: This guide was originally published on cysticfibrosis.com Written by Imogene The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the…
I used to love a margarita on the rocks with a twist. At some point in my late 20s, I went from the carefree life of a young healthy person…
Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…
Written by Neil Smith I have a rare hormonal condition called Kallmann syndrome. Its main symptom is a failure to start or fully complete puberty. It is also associated with…
Written by Kendra J. Bjoraker, Ph.D., L.P. Living well with a chronic condition such as Fabry can seem contradictory. Following diagnosis, you don’t have a shelf in your mind that…
Super T’s Mast Cell Foundation was created in 2015 by my daughter Taylor upon receiving her diagnosis of mast cell activation disorder. After traveling over twenty hours to consult with…
by Lauren Taylor from In The Cloud Copy Spinal muscular atrophy or SMA is a disease that occurs due to loss of motor neurons, which are the nerve cells that…
by Lauren Taylor from In The Cloud Copy Sickle cell disease or SCD is a type of red blood cell disorder in which the normally round red blood cells are…
by Lauren Taylor from In The Cloud Copy Nephrologists worldwide have shown that there is a huge unmet need when it comes to the treatment of various glomerular diseases, in…
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