CSRF hosts an international patient meeting every two years, and in October 2019 we all gathered at the Emory Conference Center in Atlanta, GA. Earlier in the year, interested CSRF members formed a steering committee to identify and fill the agenda with topics of interest that we don’t see much in the literature or at other conferences. As we opened up about our experiences, we started sharing details that we sometimes hide, or dismiss, or simply find too heavy to share with others. We face challenges that go beyond the information we receive at the hospital. And, we recognize that this is a disease that you must experience to truly understand. Empathy and broad validation feel so good when you spend most of your time around people who can only grasp small pieces of what you are going through.
These shared experiences became a list, which became a large “yes or no” survey, ex. I experience(d) pain, I tried alternative therapies in pursuit of relief, I am scared of what this disease is going to do to my relationship. Not all of them were scary, ex. this experience has strengthened my relationship, I have developed grace for myself, I had a great care team that did their best. We are curious to compare and contrast.
We had 178 people fill out the survey. CSRF then created and shared a spreadsheet of the responses. Enthusiastic feedback from patients was exactly what we hoped for, and it was fascinating reading for a lot of professionals who had not considered some of the things we talked about in it. A medical student at Johns Hopkins worked with the de-identified data set using scientific analysis tools and helped us understand ways to improve collection quality in the future.
A couple of years later in May 2022, the European Society of Endocrinology (ESE) held its annual conference and made patient organizations an offer we could not refuse: a dedicated 50 minute session to present on any topic of our choice with optional recording (of course we did) and a free booth in the non-profit area. When we decided to book these offers in early 2022, we knew we needed another committee and another survey. We looked at what we had done in the past, took some of the good wisdom we’d received, and built a new project. We had 175 responses to this survey.
But wait, there’s more!
We typically attend the annual conference of the National Organization for Rare Disorders (NORD) in Washington DC each October. For 2022, NORD put out a call for poster abstracts in several categories, and one was looking at how patient organizations are using novel methods to advocate for their communities. Our survey procedures and outcomes seemed like a perfect fit for this category, our abstract was approved, and we created our first physical scientific poster!