The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
When we think of disabilities, a cane, walker or wheelchair may come to mind. Or perhaps you think of someone who is blind or deaf or has a learning disability.…
Have Neurogenic Orthostatic Hypotension or other MSA? Join the LIVE FEED and Watch the annual MSA Patient & Family Conference on Facebook On October 13-14, the Multiple System Atrophy (MSA)…
A recent announcement from the wonderful World Spina Bifida & Hydrocephalus Day website brought back some memories for me. Even before I became pregnant with my son, I heard about…
They look perfectly healthy. There's no outward sign of disease. But for millions of Americans, chronic and debilitating conditions such as idiopathic pulmonary fibrosis (IPF) could be lurking inside. October…
Don't forget to register for the upcoming MDS event in your area using the information above! A MDS Patient MDS Patient & Family /Caregiver Forum will be held in Stanford,…
It's that time of year again. Families across the country are making their annual pilgrimage out to the local pumpkin patch (or Kroger) to pick up fall's fruitiest porch decoration.…
Is it possible to check into the hospital and become sicker? Absolutely. Let's say you're suffering from a chronic condition, such as multiple sclerosis, cystic fibrosis, idiopathic pulmonary fibrosis or…
Times Square is the big time when it comes to celebrity. The Jumbotrons never grow dim. And throughout the month of October, some very special celebrities will be featured on…
It seems every disease has its day. According to the fabulous website World CP Day, for cerebral palsy (CP) that day is October 6. More than 17 million people around…
HSG 2017 is coming your way Denver! The Huntington Study Group (HSG) is a global professional group dedicated to finding better treatments and ultimately a cure for Huntington Disease (HD). They…
Pack your bags LGS Warriors, your conference is headed to Orlando, FL this November! The LGS Foundation is holding it's fifth International Family and Professional Conference to promote collaboration between LGS…
PW Partner the Amyloidosis Foundation (AF) is hosting their annual amyloidosis research benefit and you won't want to miss it! The AF was founded by two amazing amyloidosis patients who strived…
This year, The International Advocate for Glycoprotein Storage Diseases (ISMRD) has moved their International Conference from the US to Rome, Italy! The ISMRD is a non-profit who aims to be…
Some diseases are a mystery. If the name of the disorder starts with "idiopathic," it means that no one really knows what causes it. That's the case with a rare…
Spinal muscular atrophy (SMA) is a devastating, rare inherited disorder that causes muscle weakness and degeneration. There are four types of spinal muscular atrophy and currently there is no known cure…
The Pulmonary Fibrosis Foundation (PFF) is hosting their biennial summit this November! Pulmonary fibrosis covers 200 different conditions that include sarcoidosis, IPF, scleroderma and other rare diseases. The conditions are characterized by…
The Cystic Fibrosis Foundation (CFF) is hosting the North American Cystic Fibrosis Conference (NACFC) in Indianapolis, Indiana. The CFF is an amazing non-profit that aims to cure cystic fibrosis while…
Pull out those calendars! If you’ve been searching for an opportunity to connect with others living with Waldenstrom’s macroglobulinemia (WM), or with those who help care for these individuals—this may…
Nearly 100 million Americans live with chronic pain. That's a world of hurt. Chronic pain is defined as persistent pain that lasts more than three months. According to Johns Hopkins…
Come join Global Genes in attending the 6th annual rare patient advocacy summit Meet rare disease advocates from all over the world in an educational conference setting to create, share,…
The clock is ticking to sign up for this big conference! Thousands are expected to flood the convention halls at the North American Cystic Fibrosis Conference (NACFC) this November. Indianapolis,…
In 1973, the lifespan of a person with sickle cell disease (SCD) in the U.S. was only 14 years. Thanks to the dauntless efforts of researchers, scientists, and clinicians, today…
On September 28th, 2017 at 9 PM EST, a new online, mindfulness-based, stress reduction course will be given by none other than the extraordinary Julie Desch, MD. She is a physician…
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