A new effort to raise awareness and funding for rare disease is underway. SMA News Today reported that NORD, the National Organization For Rare Disorders, organized this campaign to challenge…
Clinical Trials Transformation Initiative presents the 9th annual SCOPE Summit in Orlando, Florida. This event is for clinical ops executives and will consist of a roundtable and presentations highlighting clinical…
The Mastocytosis Society presents a support group meeting open to the public in Springfield, MO. Be sure to RSVP to Heather Largent: [email protected]
The Mastocytosis Society presents a support group meeting open to the public in Austin, Texas. Be sure to RSVP to Cheri Smith: [email protected] Please put the meeting area in the…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
Save the date for this Amyloidosis Webinar! Attend this virtual event to find out about cardiac amyloidosis, specifically wild type transthyretin cardiac amyloidosis (ATTRwt). Mathew S. Maurer, MD, the Arnold…
It's a good time to check in on your eye health because January is Glaucoma Awareness Month! More than 3 million people in the United States have glaucoma - and…
January is Thyroid Awareness Month! It may be difficult to find time to learn a little more about your body and health tips - but since it's Thyroid Awareness Month,…
January is National Birth Defects Prevention Month! A birth defect is defined as a problem that happens while a baby is developing in the mother's body. Most birth defects happen during the…
Tomorrow is Moebius Syndrome Awareness Day! Moebius Syndrome Awareness is celebrated globally each year - with the goal of raising awareness about this rare condition and to educate the many…
The Mastocytosis Society presents a support group meeting open to the public in Minneapolis, MN. Be sure to RSVP to Melissa Lovett: [email protected] [email protected]
The Mastocytosis Society presents a support group meeting open to the public in Cape Coral, Florida. Dr. Theoharides MD, PhD is guest speaking. Be sure to RSVP to Michele Kress:…
If you live near Pompano Beach in Florida, the Water Balloon Bulls-eye charity event is not to be missed, reported Sun Sentinel. The event is focused on raising money, as…
Patient Worthy is proud to announce we are participating in Patients as Partners EU in London, UK on January 23rd. Patients as Partners EU represents the only conference opportunity in Europe…
The Canadian Fabry Association wants to create awareness for rare diseases and you can help! They want to get as many people to wear a Be Rare Be You tattoo…
December and January can be busy months with all the running around and family activities. Before your calendar fills up with holiday happenings, the Familial Hypercholesterolemia Foundation (FHF) wants you…
The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…
No one knows how difficult living with hypereosinophilic syndrome (HES) is unless you walk in the shoes of those who have it, treat it, or have a loved one who…
On January 12-14, 2018 leading minds from around the world will convene in Orlando, Florida for the annual Heme Biosynthesis and the Porphyrias Recent Advances Conference. Yes, it's a mouthful,…
Zero. Nada. Zip. Usually having nothing isn't a good thing, but in the case of people with uncontrolled seizures--like those that occur with Dravet syndrome--zero (as in no seizures) is…
Lung Cancer Awareness Month started with a bang at the Press Conference and Panel Discussions today in the Holeman Lounge of the National Press Club. Two panels of renowned lung…
Every year, families travel across town and from around the country to be together for the holidays. This year, while you're sharing pumpkin pie and Black Friday Sale flyers, take…
November is Pulmonary Hypertension Awareness month, and this year the Pulmonary Hypertension Association (PHA) has launched a special, nation-wide campaign to raise awareness for the disease called The Right Heart. Pulmonary…
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