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Speaker Sheet

Advocacy…

I recently co-authored an article about what to do the day after receiving a diagnosis. Steps to take, tips to follow and how to find support. I have since been thinking about it and what I did with my life after my son was diagnosed with an ultra-rare disease. As caregivers and patients, some of … Continue reading Advocacy…

Frustrating.

Frustrating. The number one word used over and over when asking rare disease patients and caregivers how they feel when hitting the ER or Instacare- any unplanned medical visit. Rare disease patients are not your standard walk in ER patient. They are not drug seekers. They need help. This question is part of a survey … Continue reading Frustrating.