rare disease

Having a rare disease such as neuromyelitis optica spectrum disorder (NMOSD), especially when it’s an invisible disease, is like being a double agent. While some people in my life know about my health challenges, I don’t broadcast them to everyone. In such cases, withholding my NMOSD thus becomes a…

Living in a big city like Denver has always had its perks. My office downtown is but a 10-minute drive from home, our food scene is incredible, and the city is diverse and always growing. And one of the biggest blessings of living in Denver is having good access…

A few weeks ago, the EveryLife Foundation for Rare Diseases hosted its 12th annual Rare Disease Week on Capitol Hill. This year, 600 advocates, including me, gathered in Washington, D.C., to learn about public policy, share our stories with legislators, and advocate for our communities. I never dreamed…

March is NMOSD Awareness Month and patients and advocates are planning several initiatives to put a new focus on the progressive autoimmune disease, known fully as neuromyelitis optica spectrum disorder. Affecting more than 25,000 people worldwide, NMOSD is a disorder characterized by inflammation of the optic nerve — the…

Since 2008, the global rare disease community has observed Rare Disease Day every year on the last day of February. Currently, there are more than 7,000 known rare diseases affecting up to 30 million, or 1 in 10, Americans. In 2017, my youngest daughter, Bella, was diagnosed…

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.

A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

Because there is little information available about certain diseases, many people may be misdiagnosed or undiagnosed. People with rare diseases are at a disadvantage compared with people with well-known medical conditions. Not only do people with rare diseases have limited information, but also their treatment is often not as…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…