No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…
Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…
One of the truest ways to help those with rare diseases is to make people aware of them. The more people who are aware, then more people can donate. The more…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…
As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…
Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…
You know what they say—everything’s bigger in Texas. And this year’s FH Global Summit, located in sunny Dallas, will be bigger than ever. Nobel laureates as speakers? √ Intensive discussions among healthcare leaders? √…
Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…
The Lyme Disease Challenge can be fun for everyone! Even dogs can make some pretty funny faces and help raise awareness. Get your four legged friend in on the action!…
I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
Parece que Pfizer quiere comprar una compañía sueca que proporciona un tratamiento para la enfermedad inflamatoria multisistémica de inicio neonatal, (NOMI). NOMI pertenece a una familia de enfermedades conocidas como…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
According to the Center for Disease Control, there were nearly 35,000 cases of Lyme disease reported in the United States in 2014 (the most recent year on record). While that…
Are you ready for the Lyme Disease Challenge? Have fun and do something good at the same time: Challenge your friends and make the funniest face you can muster up! Lyme Disease…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
Su americano promedio probablemente piensa en adultos de mediana edad o ancianos cuando escuchan la palabra artritis. Lo triste es que realmente no se les puede culpar. Tome este comercial…
At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
Can you and your friends handle the Lyme Disease Challenge? Challenge someone and find out! Take a bite. Share a fact. PASS IT ON! (The funnest part is seeing your…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
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