As we head into fall, there’s a lot happening in the world of chronic disease advocacy!
In this edition, learn simple tips for acing your in-person meetings with legislators, explore survey findings on inequities in the rare disease community, and get inspired by patient stories like Mary “Biafra” Denmark’s journey with genetic kidney disease.
Also, see a new resource for students tackling chronic disease advocacy and hear from new CDC Ambassador, Sam Rhodehamel.
1. Chronic University #2: Perfecting the In-Person Meeting
What do legislators want to hear from you? Find out in the latest Chronic University video: Perfecting the In-person Meeting! Hear from elected officials, professional advocates and experienced patients about how to ace your in-person meetings and make your voice truly matter. Don’t just show up—inspire your elected officials to make change. Watch here.
2. Disability Voting Rights Week: Your Voice Can Make a Difference
It's Disability Voting Rights Week (September 9-15), and we're raising awareness about making voting easier for everyone, especially people with disabilities and chronic diseases. Our nationwide survey found that 18% of people with chronic illnesses have a hard time voting — that’s 25 million Americans. Voting helps shape policies that affect your health, so register, know your rights, and plan your vote to make sure your voice counts! Read more here.
3. NORD and Rare Disease Diversity Coalition Release New Survey Findings on Inequities in the Rare Disease Community
The next administration and Congress will shape crucial healthcare policies,. Both the Trump-era tax cuts and Biden's expanded ACA premium tax credits are set to expire, demanding Congressional action in 2025. Beyond these key areas, bipartisan interest may drive reforms in Medicare Advantage, pharmacy benefit manager transparency, and the 340B program. Read more here.
4. A family first: Being diagnosed with a genetic kidney disease
September 4th was National Polycystic Kidney Disease (PKD) Day, a day to advocate for and highlight patient stories like Mary "Biafra" Denmark's journey with PKD. Diagnosed after discovering cysts on her kidneys, Biafra has managed her disease with positivity and determination. Her advice? Stay informed, advocate for yourself, and embrace the challenges with humor—like naming your kidneys! Read her story here.
5. Chronic Disease Advocacy Resource for Students
Image courtesy: Generation Patient
As we look back on Chronic Disease Month, we thank you all for advocating loud and far! As such, we’d like to highlight one of our newest ambassadors — Kaye Peterson, from Kentucky.
“I advocate for both my family and my community. Being from a small rural area in Central Kentucky, diabetes runs rampant here. I decided to speak up and advocate for farm families like mine who struggle with operating a farm and dealing with the additional cost of having a child with diabetes, more specifically, the outrageous price of insulin if uninsured or underinsured. If I can use my voice to help my neighbors get the help they need, then I’ve done my job.”
If you’re interested in joining Kaye in our Ambassador program, click here.
6. CDC Ambassador Spotlight – Sam Rhodehamel
Image courtesy: Sam Rhodehamel
CDC Ambassadors come from far and wide, including across the pond in England! To celebrate chronic disease advocacy from all parts of the globe, we’re highlighting one of our newest ambassadors –Sam Rhodehamel, originally from California, now residing in London.
“At 22, right after graduating from college and starting a new job in London, I developed Long COVID from a seemingly ‘mild’ acute infection. I suddenly found myself bed-bound struggling to breathe, think, or function for months on end... My life was turned upside down, I felt doomed. Through years of resting and researching I was slowly able to recover enough to start a new job and later go back to university to complete a master's degree while still battling painful flares daily.”
If you’re interested in joining Sam in our Ambassador program, click here.