Rare Disease Day 2019 -- Bridging Health and Social Care

Today, February 28, 2019, is the 12th annual Rare Disease Day and the theme this year is “Bridging health and social care.” There are over 300 million people throughout the world struggling with an estimated 7,000 rare diseases every day. An estimated 20 to 30 million Americans are living with a rare disease.

Sadly, more than 90 percent of these diseases still have no FDA-approved treatment.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care.

Parents dealing with a child with a rare degenerative disease can eventually find themselves having to adapt to daily challenges as their child’s condition worsens. A child that used to run and play may start having trouble walking and require a walker to get around. That same child may change from being diaper trained at a normal age to being incontinent and requiring diapers again as a juvenile.

Eventually the child may go from using a walker to being confined to a wheelchair. Then simple things like transitioning him from the wheelchair to the dinner table, getting him in and out of the car, changing a diaper and getting the child into the bathroom can become enormous struggles — over and over every single day.

Watching a child’s condition decline physically and cognitively over time is a heartache for parents that defies description.

The 12th annual Rare Disease Day puts a focus on helping people coordinate the medical, social, and support services parents need in order to tackle those daily challenges.

Here are some rare disease testimonials: