Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
One of the greatest gifts of being a kid is imagination. When you're a kid, anything is possible and even the hardest times can turn into something so much better…
For so many in the rare disease community, courage isn't a just a virtue - it's a necessity. Many have to overcome odds and obstacles that most others don't have…
As we close out the month of March - it's important to give a little thought to some of the lesser-known rare diseases that are often overlooked. Bleeding disorders is…
March is not just multiple myeloma awareness month... ...it is multiple myeloma ACTION month! Multiple myeloma is a form of cancer that develops in a type of white blood cell…
Last week was World Kidney Day! And in fact, the whole month of March is kidney month - so there's no excuse to brush up on some key kidney facts…
For so many of us, a good night's sleep is a refuge; from our long hectic days, from our piling problems, or even from the stresses of managing our rare…
33 rare disease organizations across the country have teamed up for $1 million fundraising goal during the months of February and March to fund research and support patients, in honor…
Last month, 125 rare disease patient organizations sent a letter to Medicaid directors from individual states highlighting the importance of Medicaid access for rare disease patients. "As organizations representing millions…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
February is Turner Syndrome awareness month! Turner Syndrome is a chromosomal condition that affects approximately one in every 2,000 women. The condition occurs when a woman lacks all or part…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
Talk show titan Wendy Williams (How you doin'?!) announced at the top of her daily talk show that she has been diagnosed with the rare disease Graves’ disease and hyperthyroidism. Graves' disease…
February is Eisenmenger Syndrome Awareness month. Eisenmenger syndrome is very rare and devastating, so it deserves our attention. Let's get to know a little more about this heart condition. Eisenmenger syndrome…
February 14th is Valentine's Day! Make sure to treat your valentine to a special day - and while your at it, spread the word that February 14th is also National…
In an episode CNN's webseries LoveStory, titled Love Accessibly - we follow Kristen as she looks for love in New York City as a woman in a wheelchair. With her…
Still getting over that crazy Super Bowl game?! If you're an Eagles or Patriots fan, you might need abit more time to gloat/recover - but for the rest of us,…
"Ok, well first of all...I know nothing. But if your kids are anything like me, they're going to break a lot of toilets!" Those are the starting words writer and…
Earlier this year, Patient Worthy featured Ashley and her non-profit Love Not Lost – an organization that provides portrait sessions and photo albums for families dealing with a terminal illness…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
Who said helping cure and treat rare diseases couldn't be fun?! Last week, Three Lake Partners - a venture firm that invests in healthcare and quality-of-life solutions for patients dealing…
Start a conversation - and look a little snazzy while doing so! - by wearing purple today (February 2nd) to raise aware for neuroblastoma. Neuroblastoma is a rare cancer that…
For many - leprosy is nothing but an antiquated disease from biblical times with no present-day relevance. But in fact, nearly 150 to 250 people in the United States and 250,000 around the…
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