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…
Odds are someone you know has a chronic, even debilitating illness, but you probably have no clue how it's affecting his/her life. Just because a condition isn't obvious doesn't mean…
Nearly 500 myositis patients and caregivers are expected to attend this conference, hosted in the wonderful San Diego, CA! There will be over 80 sessions where patients and caregivers can…
#DazzleVegas Adult early-bird registration: $299, ends July 7 Regular registration: $349, July 7–August 28 Junior Zebra Registration: $175
In our derisive political environment, it's hard to find something everyone can agree on. But this month--Ovarian Cancer Awareness month, to be exact--party lines are coming together to heighten knowledge about…
It's National Immune thrombocytopenic purpura (ITP) Awareness Month! In honor of ITP awareness month, here are some ITP facts from the 2017 PDSA Conference in July: The conference kicked off…
Spasmodic Torticollis/Dystonia or ST/Dystonia, is a non-profit organization whose aim is to support patients suffering from ST, also referred to as cervical dystonia. Dystonia involves involuntary muscle contractions that may…
Time is running out to register for #PHAontheRoad in Pittsburgh on Saturday, Sept. 9th at the Hyatt Regency Pittsburgh International Airport hotel. This is the @PulmonaryHypertensionAssociation’s last “on the road”…
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