Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…
Dear strong one, I look at you and I see determination. Things are so hard for you right now, rushing from hospital to hospital. I know that you never imagined…
The Proclaimers said they would walk 500 miles for the one they love. This balloon does one better. In a blaze of purple, 600 balloons were released in the UK…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
Nos ha ocurrido a todos. Es un viernes por la tarde. Estas en el aeropuerto, ansiosamente esperando cerca de la puerta de abordo para el próximo vuelo. Han pasado demasiados…
Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
For many people in the rare disease community, becoming a medical detective is a matter of necessity. You read everything you can get your hands on, then burn up the…
What gets teens more hyped than watching someone get a pie in the face!? Apparently, nothing! At least, Joseph Maronski and Madison Shaw seemed to think that was a pretty solid…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
Yes, the weekend of October 9, saw the Hereditary Angioedema Association (HAEA) a mile high and happy--but not the way you're thinking! What's wrong with you? The HAEA hosted the…
Bronchiectasis is a condition which damages the airways leading in and out of the lungs, stripping them of their mucus-clearing capabilities. Common variable immune deficiency (or CVID) is an immune…
We all have that one relative, who every time they see you, always asks, “So, when are you having kids?” or the mom who is desperate to be a grandmother.…
Recently, the FDA gave "breakthrough therapy" status to a potential new drug that may help prevent HAE attacks. But how does that affect you, the patient? What does "breakthrough therapy" really mean?…
Familial hypercholesterolemia (FH), a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…
In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…
For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…
When this Arkansas community rallies, they conquer. TJ Cluck was one of the thousands of people involved in the Joplin Tornado, a devastating EF5 twister that killed 161 people in…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
What are you going to be doing on the afternoon of Halloween? Some kind-hearted people will be participating in a walk, for a spooky great cause. On Saturday October 31st…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…
For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…
Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…
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