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…
The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for Focal Segmental Glomerulosclerosis (FSGS). FSGS…
Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jennifer Blood, and a Patient Ambassador, Deb Call 1-844-514-6294 to register and…
Our wonderful partners at the Cystinosis Research Network (CRN) are providing the first series of live broadcasts from a Cystinosis conference! Simply make sure you're connected to the internet and…
Register for the event here.
Register Here
$200 for members $230 for non-members There will be thought-leaders speaking, general and breakout sessions AND research updates!
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