September is IPF Awareness Month. Take a picture of yourself blowing bubbles and share them to help the cause! Use #IPF and #IPFWorld and challenge the world to join in!…
You're sitting across the table with a friend having a nice conversation over dinner, when you notice something's wrong: half of your friend's face is drooping. Because you're not a…
Active listening is important. Your health care provider needs to know not only your symptoms but also your concerns so that they can adequately address them. Arguably this is even…
I think most of us have realized by now that being a special snowflake doesn’t always feel that special. As much as I’m a proponent of celebrating our differences, when it…
Conozca a TZ la cebra del FDI! #namethezebra Os contamos la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la…
Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
It is my sincere hope that everyone has a life full of moments that are so great they take your breath away and remain in your memory forever. Unfortunately there are…
Ok, this is different. Usually when we’re reporting on a new drug study or talking about medication, we’re all about better living through chemicals. So, it’s a little weird to…
Everything that you do is more impressive than if the average person did it, because you're not average. Everyday you're combating a rare disease on top everything else. Everything you…
For some cases of dysautonomia, doctors suggest increasing the salt intake in your diet. Doing so may help raise your blood pressure to alleviate light headedness, and improve fatigue level…
Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
Tahnie tenia 16 meses de edad cuando fue diagnosticada con la enfermedad rara de cistinosis. Sus padres fueron informados que muy probablemente no viviría más allá de la edad de…
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
With less than 200,000 cases per year, Neonatal Respiratory Distress Syndrome (or Neonatal RDS) occurs when a child's lungs have not fully developed and are lacking the substance surfactant, which helps…
If you live in America, the first 100 articles during any basic Google search will be Western-centric. I’m not really condemning this. It’s expected that the media's focus will lean more toward…
Lisa is living with Myasthenia Gravis, you can read more about her journey here. Was this true for you too? Once you fully accept your diagnosis you can focus your…
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
Erin no se puede recuperar una vez en su vida cuando ella no estaba enfermo. Desde la edad de cuatro años, ella ha tenido una sucesión interminable de infecciones, sinusitis,…
People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure…
Paroxysmal nocturnal hemoglobinuria, or PNH, is a hematopoietic stem cell disorder. Hematopoietic stem cells are developed in the bone marrow, where they grow and eventually develop into red blood cells, white…
The Ice Bucket Challenge was a huge success for raising awareness and funding for ALS research. But this year, there is a new fundraising effort for the debilitating, neurodegenerative disease called…
Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
Usted sabe que esos anuncios, "¿Qué haría usted para una barra de Klondike?" Piense acerca de eso, pero en vez de conseguir el helado se llega a jugar béisbol. ¿Qué…
You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig's Disease, or that disease that Stephen Hawking has. It is a terrible disease that…
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