Lisa Marie Basile finds living with an auto-immune disease frustrating. She also had a hard time getting a diagnosis because, as she says, "...many autoimmune disorders don't come with a…
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In the world today, there are 30 million Americans affected by 7,000 different forms of rare diseases, all in need of treatment. But because the diseases are so rare, treatment for them…
Ordinary Mom Delivers Extraordinary Gift of Life BROOKWATER, Australia. Corinne Heapy, a devoted mother of two, knows firsthand, what it’s like to give the gift of life. She’s heroically…
Erin can't recall a time in her life when she wasn't sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections,…
You know those commercials, "What would you do for a Klondike bar?" Think about that, but instead of getting ice cream you get to play baseball. What would you do? Highschooler…
Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During…
Julia Domenick has spent nearly five years caring for her husband Andrew "Drew" after he suddenly became ill. "Drew just had his 50th birthday in rehab! We never thought that he…
Meet TZ the IDF Zebra! We told you this year’s conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra…
We told you why this year's conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra Exciting. Find out…
Franklin Gutierrez is back! After dealing with the long road of recovery from his Ankylosing Spondylitis diagnosis, which we detailed here, Gutierrez made his first MLB start June 24th, 2015…
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…
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…
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)…
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,…
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…
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