A Rare Disease Warrior

A Rare Disease Warrior

By: Kayle Jansson, Mom of Embry Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Our journey with...
Our Rare Disease Journey

Our Rare Disease Journey

By: Amy Studer, Mom of Reagan Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Like all great...
Navigating a Difficult Road

Navigating a Difficult Road

By: Hayley, mom to Carter Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. A-year-and-a-half ago we...
A Rare Disease Discovery Leads to Family

A Rare Disease Discovery Leads to Family

By: Scotti Taylor, mom of Drew, 22   Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. About a...
Spreading Awareness in Puerto Rico

Spreading Awareness in Puerto Rico

By: Shelia Hernandez-Hale, PRISMS Regional Representative Puerto Rico   On Smith-Magenis Awareness Day on November 17th, Shelia Hernandez-Hale, PRISMS Regional Representative for Puerto Rico, engaged in various activities to spread awareness of Smith-Magenis...
A Day That Changed My Life

A Day That Changed My Life

By: Luke Schumacher, Dad to William   It was March 22, 2023. I was on a flight to San Diego. The trip was intended as a getaway after a challenging winter with our son, Will. He was eighteen months old at the time, and despite his failure to meet developmental...