The IDF's 2015 National Conference is quickly approaching! For 3 days, Louisiana will welcome the IDF and all of its constituents and supporters. From Thursday, June 25th- Saturday 27th, the IDF…
1. Rare diseases tend to come with long, difficult names. For the many people who are unfamiliar with them, they can be a mouthful and you may have to repeat…
Your health is important—really important—so naturally, you want to make the best decisions for your body. However, at times, that gets tricky, especially if you have a compromised…
Primary Immune Deficiency and Dysautonomia - Living With a Rare Disease Ilana Jacqueline looks like a perfectly healthy young woman, but looks can be deceiving. It took 19 years before…
Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information. Yoni Maisel (Yonatan Maisel)…
You can lead a healthier lifestyle and help decrease some of your A.S. symptoms and frequency of flare ups by following these steps. 1. Exercise [iframe src="http://giphy.com/embed/NnwBN2NdkVx5K" width="500" height="237" frameBorder="0"…
Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it's easy to get overwhelmed. Bogged down by questions in your head--What do I do…
Over time, you may have noticed that you have neck pain, and that you’re stiffer in the morning than you are by the afternoon. The most common symptom of ankylosing…
Living with CVID? Learning to manage? PatientWorthy is looking for you on Instagram if you are living with Common Variable Immunodeficiency Disease, CVID. #PatientWorthy to share your photos with us! And…
Living the dream as a future baseball All Star, Franklin Gutiérrez, a.k.a. "Guti" was on top of the world. In 2000 the Cleveland Indians signed amateur free agent Franklin Gutiérrez,…
Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…
Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…
Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…
Doctors at Global Hospitals in Mumbai, India, have achieved a rare feat in spinal surgery. For the first time, an expert team of surgeons performed minimal access spine surgery on…
Ankylosing spondylitis (A.S.) is a form of arthritis that affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe,…
If you are considering pregnancy while managing ankylosing spondylitis, you may have a lot of questions, such as will you have the typical back pain that most pregnant women have, or…
Is SubQ part of your CVID treatment plan? Have you ever run out of numbing cream before an injection? Are you a fan of Jim Carey? If you answered, "yes" to…
After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called C1 inhibitor. So many emotions…
Sufferers of the rare and potentially life-threatening disease Hereditary angioedema (HAE) are raising red flags because Australia is lagging behind on diagnosing and treating the disease. HAE allows the body's…
Meet Amanda! Amanda’s vlog (video blog), ShAMANDAgans, helps her keep in touch with friends and family and share her story. She’s an ambitious and cheerful graduate student; going to…
Runner David Brumley was diagnosed with Common Variable Immune Deficiency (CVID) in 2008, and figured getting in shape couldn't make his health any worse than it already was. He has been…
At one point, gold-medal winning Singapore swimmer Clement Lim was bedridden for two days because he has Ankylosing Spondylitis, or A.S. "I was actually quite afraid that I'd never be…
Imagine being an incredibly happy and active 8 year old who loves sports. Now imagine your knees and ankles swelling up. You look down at your hands and your fingers…
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