Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

I got home from work and checked my mail. I had received another notice from an “impartial third party” stating: Dear Ms. Horowitz, We have received an inquiry from your insurance company and we have determined your treatment is medically necessary. You are…

“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…

Many in my millennial generation dread adulting. The idea of surviving in the real world without the comfort of a family safety net is daunting. Young adults who are barely scraping by can feel alone and isolated. I was thrust into the world of adulting fairly early. In our mid-20s,…

I discovered that I have a talent unlike any other. I’m a world champion at throwing pity parties. When times get tough and I feel lost, all I must do is put a cone-shaped hat on my head and recognize my misfortune. My glum permeates the air as I raise…

I recently started seeing a psychiatrist again to confirm the state of my mental health. Though I haven’t been experiencing any serious symptoms lately, I thought it might be good to stay on track with my checkups. Thankfully, my new doctor offered me flexible payment terms, which encouraged me even…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes. My heart leaps up and down with joy when I hear his…

I was with my son in a store recently when a coloring book for adults caught my eye. Ordinarily, I wouldn’t have given it a second glance. But what made this one special was the title on its cover: “The Road Not Taken.” I couldn’t resist opening the book.

This year, my flower garden has grown exponentially. A wonderful gift that “bloomed” from my COVID-19 boredom was the chance to develop my horticultural skills. I increased my rose collection from six bushes to 14, and I added sunflowers, teddy bear sunflowers, zinnias, wildflowers, poppies,…