Hello! My name is Regina Gordon and I was diagnosed with sarcoidosis in 1994, a rare inflammatory autoimmune disease. Care for such a disease during this time was non- existent. After starting my support group in 2016, a member in the group stated I should look at Cleveland Sarcoidosis Clinic, based in Ohio. I followed through on the suggestion. I called them and they set me up with many appointments after that I can say my health has greatly improved, but not without obstacles. I conquered them one step at a time. This prompted me to become an advocate for those who do not have a voice. Recently I saw a post on the WEGO HEALTH Facebook platform inviting patient advocates to be a featured writer for their blog. I leaped at that chance as I felt it was an important endeavor for my advocacy awareness. This will be my first ever public blogging post. I wanted to write about a first time experience attending the National Rare Disease Conference during Rare Disease week in Washington, DC. I hope you enjoy reading about just a few of the experiences I have seen and the knowledge I have gained attending such a conference!
Lesson 1: Plan Ahead
As you all know we all have bucket lists and want to check them off as we have completed that item. Well attending the Rare Disease 2020 conference allowed me that option by visiting the Smithsonian African American Museum, the National Monument, Lincoln Memorial and the Martin Luther King Monument. They were exquisite and breath-taking. My first lesson learned is to plan ahead. I researched how to catch the Metro and downloaded step-by-step directions on when to catch the bus to where to get off, staked out restaurants, planned the appropriate hotel, and learned how to use LYFT. These are things I never had to do on my own. I rather enjoyed learning how to plan for my long-awaited conference with a bit of relaxation and site-seeing between events.
Advocating as a Group
What I learned at the conference solidified my patient advocacy. There are individuals on the Hill that support rare diseases and have figured out ways we can help bring about awareness and solicit for funding. I found that advocating in groups is much different than advocating as an individual. There is power in numbers. Our group was from Indiana with various rare diseases. We told our stories and when our speaking engagement was over with, we were able to convince a Senator and a Representative to join the Rare Disease Caucus. This endeavor was by far the most exhilarating experience I have witnessed. I had been trying to get those same individuals to sign for the last four years on my own, but as a group, for me, was powerful. Prior to meeting with the elected officials, we planned who would go first to who would go last. My job was to give the closing argument. Wow! Just seeing everyone in action touched my heart and helped me to understand myself as a person with a rare disease. By understanding myself I can be a better advocate. I now know that I am “not alone.” I am one of many!
The following websites (information I received at the conference), I believe can act as a guide, and be a valuable tool to gain knowledge from. Surely, I plan to use some of the information in my advocacy and in my support group meetings:
- The Assistance Fund (they help individuals with medication who are unable to pay): www.tafcares.org
- National Center for Advancing Translational Sciences (NIH) – there is a wealth of information on their website: https://rarediseases.informih.gov
- FDA Office of Women’s Health: www.fda.gov/womenshealthpubs
- FDA Patient Affairs Staff (this site shows you how to request a listening session: www.fda.gov/patientaffairs
- Global Genes (there is a wealth of information regarding toolkits for diseases). Navigating health insurance, building relationships with your representatives, and a guide to public speaking: http://globalgenes.org/toolkits
- Rare Disease Legislative Advocates (RDLA): https://rareadvocates.org which is powered by The EveryLife Foundation for Rare Diseases: https://everylifefoundation.org
If you have never attended a rare disease or a disease specific conference, I say go for it, try it, and you will be amazed. You will also obtain valuable information, networking opportunities, and most of all new friends! I did!