awareness

A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…

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…

For one in three people with neuromyelitis optica spectrum disorder (NMOSD), bad days — marked by high levels of debilitating symptoms — are more common than good days. Patients who are more comfortable talking with their doctors about their symptoms reported fewer bad days and greater treatment…

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…

Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…

Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year. Feb. 28 (or Feb. 29 during leap…

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000…

Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m…

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…