In today's ever-changing - and downright weird - world, you'd be correct to say say (if not over-say) that technology is slowly killing us. But not in this case! Good…
June 17th is worldwide CDKL5 Awareness Day! It's our mission to give a spotlight to the rare diseases that don't often get talked about - and especially on its awareness day!…
The second week of June is Men's Health Awareness week, leading right into father's day! For all our male readers - and for the women who have special men in…
As summer approaches, let's not take our eye off the ball on awareness efforts! June is Antiphospholipid Antibody Syndrome Awareness Month! Antiphospholipid antibody syndrome is a rare autoimmune disorder characterized by…
June is here - and so is Myasthenia Gravis Awareness Month! What is Myasthenia Gravis you say? Myasthenia Gravis (MG) is an autoimmune neuromuscular disorder characterized by weakness and rapid fatigue of any of…
May 15 to June 15 is designated as Tourette Syndrome Awareness Month, a rare neurological disorder that causes involuntary movements or vocalizations known as tics. Examples of these tics include repetitive blinking, clearing…
Fresh off of Memorial Day, there is no better documentary to watch right now than HBO's John McCain: For Whom the Bell Tolls. The Arizona senator announced last July that he…
May has been designated Behçet's disease awareness month - but unlike so many of the rare diseases we cover, there are not any advocacy organizations dedicated to raising awareness and support…
Here's something on the lighter side of disease prevention efforts! Earlier this month, the Centers for Disease Control and Prevention tweeted a photo of a poppy seed muffin which was meant…
May is national Cystic Fibrosis Awareness Month! Cystic fibrosis (CF) is a genetic condition that causes progressive respiratory and digestive system damage. Someone with CF has thick, sticky mucus, versus…
Sunday, May 20th is World Autoimmune Arthritis Day! The global awareness day is aimed at raising money, consciousness, and solidarity for the millions of people who suffer from one of many arthritic…
May 12th through May 16th is National Neuropathy Awareness Week! It is reported that about 1 in 15 Americans are afflicted by neuropathy - but many of them do not…
26-year-old Ilka Brühl of Germany was born with ectodermal dysplasia, a group of genetic disorders that involve a facial cleft and overgrown airways, defects of the hair, nails, teeth, skin and…
Springtime is in full bloom and summer is right around the corner, so you know what that means? Beaches, barbecues, and bugs! While beaches and barbecues are fun, the last…
As a society, we're always watching SOMETHING. Television, smartphones, tablets, smart watches, computers - we're always glued to some form of media, so it's always nice when the people we…
Say It Out Loud: There Is No Shame in Mental Illness. These are important words that every child, teen, and adult should hear! May is Mental Health Awareness Month, with…
Back in February, we covered the $1,000,000 IPF Catalyst Challenge. Announced in April, innovators from around the world submitted meaningful solutions to improve the quality of life of those living with…
Let's get moving in May! First off, for all you pop culture/Internet meme lovers, it's that time of year... May means we're on the eve of summertime, knee-deep in springtime,…
So what is Fabry disease you ask? You came to the right place! Fabry disease is a genetic, lysosomal storage disorder that occurs when a specific kind of fat known…
This week is National Infant Immunization Week! For many of us, it was an anxiety-riddled memory of getting a ton of shots at the doctor's office when we were younger. And…
Today is International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day! We at Patient Worthy understand that a lot of these diseases you may not have heard of - which is exactly why awareness…
For many, being diagnosed with any disease – let alone a rare disease – is understandably devastating. Many have described managing their new lives as learning a new language or…
Now these are the kind of stories we love to read about! Canadian Revée Agyepong is the first adult in Canada to be cured of sickle cell anemia through stem cell…
Today is Bohring-Opitz Syndrome (BOS) Awareness Day! You'd be forgiven if you haven't heard of this rare disease, which is why awareness days exist! Bohring-Opitz Syndrome is an extremely rare condition…
Sunday, April 8th is Cushing Awareness Day! Cushing syndrome (also known as hypercortisolism, not be confused with its sub-form Cushing disease) is an endocrine disorder characterized by excessive cortisol levels…
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