Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that […]
Member Kimberly opens up about living with a rare disease Read More »
February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.1 This year’s theme is all about elevating the patient voice, so we caught up with
All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a
Day-by-day, hand-in-hand Read More »
Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it
Uniting for hope on Rare Disease Day 2014 Read More »
Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe. The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000
Raise Your Hands for Rare Disease Day Read More »
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a
Rare Disease Day: Together, We Can Do More Read More »
For patients with prevalent diseases, it may be easy to find others with your condition. You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area. For those with rare diseases, the simple act of finding another patient like you isn’t
Rare Disease Day 2011: “Rare, But Equal” Read More »
Today, we’re joining the National Organization for Rare Disorders (NORD) to help raise awareness for Rare Disease Day. In recognition of the day, we recently interviewed Gracie, a valued member of our Devic’s Neuromyelitis Optica (NMO) community. Devic’s NMO is a rare autoimmune inflammatory disorder which affects the optic nerve and spinal cord and is
It’s Rare Disease Day!
Interview with Gracie (Devic’s NMO Patient) Read More »
