|
August Reflections: Your Voice, Your Impact
August has arrived, bringing those bittersweet final weeks of summer. As we pause to reflect on the progress we've made – both professionally and personally – in this first half of 2025, we're reminded of the incredible strength that comes from our connected skin disease community.
Maximize Your Resources: This is the perfect time to tap into the wealth of resources and networks at your fingertips. What support does your organization need to finish 2025 strong? We're here to help – reach out with your questions, ideas, or suggestions anytime.
Seize the August Opportunity: With Congress in recess this month, a unique window has opened for meaningful advocacy. Local congressional offices are more accessible now, creating ideal conditions for educating your representatives about skin diseases and the real impact they can have. Remember: personal stories are your community's greatest asset – no government expertise required, just your authentic experience and willingness to share it.
Celebrating Major Victories: Before we go further, take a moment to celebrate what we've accomplished together. Your voices from our Capitol Hill Day advocacy efforts have created real change! Congressman Buddy Carter (R-GA) recently introduced the Pharmacy Benefit Managers Reform Act of 2025 (H.R. 4317), directly addressing one of CSD's top legislative priorities. This bipartisan legislation – which will ultimately improve access to life-saving medications – happened because you showed up, spoke up, and made your voices heard. See the legislative and policy updates section below for more wins!
Take Action: Ready to build on this momentum? Strengthen your advocacy skills by encouraging your members to email their Congressperson a request to cosponsor the PBM Reform Act of 2025. The CSD's new Action Alert platform makes it easier than ever – individuals can contact their legislators with just the click of a button!
Our advocacy matters. Our stories change policy. Thank you for being part of this powerful movement.
| |
Here's a preview at what you'll find in this month's newsletter:
- CSD Full Summer Meeting Recording and Upcoming Fall Meeting - September 24
- CSD Member Empowerment Webinar Series: "Maximizing Your Nonprofit's Social Media Impact" - Thursday, August 21
- Legislative and Policy Updates - Seize the Opportunity During August Recess
- Sign Up for the "CSD Member Resource Sharing" Facebook Page
| | |
Mark your calendars for our September Member Empowerment Series webinar, "Amplify Your Impact: Using People Strategy to Fuel Mission Success." In this webinar, Rachel Platt, a strategic human resources expert, will help us explore how a strong people strategy—focused on culture, clarity, and capability—can elevate performance, support sustainability, and position your organization to deliver greater results.
Designed for nonprofit leaders and mission-driven changemakers with 10 or more employees, this session offers practical insights into leveraging your people to amplify your purpose.
Date: Thursday, September 18
Time: 2PM - 3PM ET
Register HERE!
| | |
Seize the August Opportunity
With Congress in recess this month, a unique window has opened for meaningful advocacy. Local congressional offices are more accessible now, creating ideal conditions for educating your representatives about skin diseases and the real impact they can have.
Remember: Our personal stories are our greatest asset – no government expertise required, just advocate's authentic experience and willingness to share it.
See here for more information on how you your organization can seize this August opportunity to meet with legislators while they're in town!
| | |
Legislative Victories
Our voices during the CSD Capitol Hill Day have been heard loud and clear, and we're already seeing tangible results from your efforts.
Legislative Victory on PBM Reform: Congressman Buddy Carter (R-GA) recently introduced the Pharmacy Benefit Managers Reform Act of 2025 (H.R. 4317), directly addressing one of CSD's top legislative priorities and Hill Day "asks." This bipartisan legislation will ultimately improve access to life-saving medications for patients across the country.
Senate Protects NIH Funding: Our advocacy efforts have also resonated in the Senate, where the Senate Appropriations Committee recently passed the Fiscal Year 2026 Labor, Health and Human Services (LHHS) bill. This critical legislation rejects the Administration's proposed 40% funding cut to the National Institutes of Health (NIH) and instead increases funding by $400 million. The bill also rejects proposed restructuring of the NIH. These wins occurred because you showed up, spoke up, and made your voices heard!
Next Steps - Keep the Momentum Going: The House of Representatives is set to take up its FY26 LHHS bill when they return to D.C. next month. We encourage you to share the CSD's action alert platform with your members; this advocacy tools allows your members to easily email their legislators about both the PBM Reform Act and the FY26 LHHS appropriations bill.
Your continued engagement is essential to securing these important victories for the skin disease community.
| | |
NIH-Wide Strategic Plan for Autoimmune Disease Research
The NIH-Wide Strategic Plan for Autoimmune Disease Research represents the federal government's first coordinated effort to accelerate autoimmune disease research across all National Institutes of Health, developed through extensive input from researchers, clinicians, advocacy groups, and patients in response to Congressional direction.
With over 140 autoimmune conditions affecting at least 50 million Americans, this inaugural plan establishes cross-cutting research priorities and elevates autoimmune diseases as a national research focus. The strategic roadmap aims to advance scientific discovery, promote collaboration, and ultimately improve outcomes for the millions of people living with or at risk for autoimmune diseases.
| | |
Autoimmune Community Summit Next Month
The CSD is proud to support the Autoimmune Community Summit! Join us September 18-19 for this FREE, virtual event hosted by the Autoimmune Association. Whether you're living with autoimmune disease, supporting someone who is, or working in the field, the summit offers valuable information and community connection.
We’re excited to be a virtual exhibitor for this event and to champion awareness for the 50 million Americans living with autoimmune disease. With topics ranging from new treatments and nutrition to mental health and advocacy, there’s something for everyone. Sessions are easy to understand, and you can view live or on-demand.
Register HERE!
| | |
New "CSD Member Resource Sharing" Facebook Page
The CSD is excited to announce the launch of our new "CSD Member Resource Sharing" Facebook page, a private group designed exclusively for CSD members to connect, collaborate, and grow together.
Whether you're seeking guidance, sharing insights, or looking for tested resources, this is your space to tap into our collective expertise.
What you'll find here:
-A supportive community of fellow advocates and professionals
-Proven resources, templates, and guides you can adapt for your own work
-Opportunities to ask questions and get practical advice
-A place to share your successes and learn from challenges
How we help each other:
Every member brings unique experience and knowledge to our community. By sharing resources and insights, we can work more efficiently, avoid reinventing the wheel, and amplify our impact for the skin disease community we serve.
Click on this link to join the Facebook group!
| | |
Patient Survey Reveals the Real Affordability Problem
The EACH/PIC Coalition's Patient Experience Survey findings are out—and they show insurance, not drug costs, is the real barrier:
- Many patients called medications "unaffordable" even with $0-$10 monthly payments
- 100% of patients who stopped medications cited insurance issues (denials, prior auth, step therapy)
- Only 14% cited out-of-pocket costs alone as the reason for missed doses
Bottom Line: Policies targeting individual drugs miss the mark—insurance coverage drives affordability challenges.
What's Next?: The EACH/PIC Coalition has created a policy brief which distills these findings into actionable recommendations for lawmakers, regulators, and advocates. Please feel free to share these social media posts with your members! (Facebook, Twitter/X, and LinkedIn)
| | |
August is Psoriasis Action Month
The National Psoriasis Foundation is leading the effort on August's Psoriasis Action Month, which is focused on exploring ways to optimize your health with the right tools, information, and support to improve your health and happiness. Please see here for more information about how to get involved!
| | |
1717 N Street NW, Washington DC, 20036
info@coalitionofskindiseases.org
|
| |
The Coalition of Skin Diseases gratefully acknowledges the generous support of our
Healthcare Industry Partners.
| | | | |
