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”…
If you're a patient of rare disease, it's nice to know that there are medical professionals out there fighting for you. Check out what's happening in the professional world of…
Want an excuse to get to Florida and learn more about the science of human genetics in society and health? Then we definitely have an event to tell you about!…
The Myositis Association (TMA) supports the myositis community, helps to fund myositis research and increases myositis awareness. Registration is currently OPEN for their 2017 Annual Patient Conference. Details below: Who: The…
The first Disorder: The Rare Disease Film Festival (RDFF) is coming to Boston, MA this October! Check out details below: Who: Rare Outreach Coalition, LLC. What: Disorder: The Rare Disease Film…
October is a time for celebrating autumn and Halloween in the US. But it's also Gaucher Disease Awareness Month! Mark your calendars for this Gaucher Disease event: Who: The National…
One of my favorite places to visit is Savannah, Georgia. And what better reason to visit than an spinal muscular atrophy (SMA) charity event? Who: SMA Angels What: SMA Angels Charity Ball…
The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness! Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino…
Patient Worthy Partner and rare cancer advocacy group The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is partnering with CancerCare to bring you an event on October 4th that you won't want…
If you or a loved one has acromegaly or suspected acromegaly, then this is a free webinar you won't want to miss. The webinar is hosted by the Pituitary Network…
September is Global Pulmonary Fibrosis Month. If you or someone you know and love has a form of this devastating disease, you know how important it is to spread awareness…
August 21st is the online registration deadline for this rare disease event! The site says the 15th and the 21st, so either way, you'll want to check out the details…
Global Genes is hosting its annual Tribute to Champions of Hope event for the rare disease community. Here's all you need to know about it: What: A blue-tie cocktail hour and dinner event…
Global Genes is hosting its 6th Annual RARE Patient Advocacy Summit for the rare disease community! Here's all you need to know about it, and why you won't want to miss it:…
I love the bumper sticker that reads: “13.1 Because I’m only half crazy.” It makes me laugh, as do most bumper stickers that require a certain degree of esoteric knowledge…
Come out to this live PBC event to learn, hear, and empower yourself on the latest PBC news and information Get the chance to listen to nurse educator, Jennifer Blood…
Our partner, The MDS Foundation, is hosting another wonderful event for patients and caregivers. The event is completely free, just don't forget to register! When: Saturday, September 9th, 2017 Where:…
The United Leukodystrophy Foundation is hosting two two-day long events for families and medical professionals! Here's all you need to know about it before registering: What: Cocktail reception and dinner, fascinating…
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Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.