Header - Month & Year
CSD Members on Capitol Hill

It is with a full heart that the CSD wishes you a very happy holiday season! As you reflect on the end of 2024, please give yourself a pat on the back for all the amazing work you've put into the skin disease community this year.


In the words of novelist Paul Theroux, "Winter is a season of recovery and preparation." We encourage you to take some time for you - maybe that means curling up with a good book by the fireplace or embarking on a ski adventure or baking holiday cookies with loved ones. You can't pour from an empty cup, so this holiday season, please prioritize filling your cup - you deserve it.


Take a peek at what you'll find in this month's newsletter:


  • CSD Winter Meeting and Vote for 2025 Board Members
  • Mark your calendars for the CSD 2025 Hill Day from May 18 - 20!
  • CSD QR Code for Healthcare Professionals and the Community At-Large
  • CSD Participates in FDA Patient Listening Session
  • Legislative and Policy Updates
  • Patient Group Learning and Engagement Opportunities
image is a screenshot of the first PowerPoint slide of the CSD Winter Meeting

CSD Winter Meeting and Board Vote for 2025


The CSD held its Winter 2024 Meeting last week; it was a wonderful way to review the CSD's activities and achievements in 2024 and to look to the year ahead. Please see a copy of the presentation here.


The CSD's Governance and Nominations Committee is pleased to present the slate of candidates for election/re-election to the Board of Directors for the 2025 - 2027 term. Please click here to place your vote by December 18th.


President –  Brindley Brooks

Treasurer – Brent Hazelett

Member at Large –  Chris Boynton

Member at Large–  Janice Schwartz

Member at Large –  Holly Priebe


In accordance with CSD's bylaws, each Associate Member (Patient Group) in good standing is eligible to record one yes/no vote for the proposed slate. Names are collected solely to verify representation of required majority of members. All tallies will remain anonymous.

photo of Power Point presentation during CSD Capitol Hill Day 2024

CSD 2025 Hill Day


Mark your calendar for the upcoming CSD Hill Day from May 18 - 20, 2025! We're excited to head to Washington, D.C. to advocate on behalf of the 84 million Americans with a skin disease. In addition to meeting with legislators to discuss the CSD's legislative and policy priorities, we'll have prominent speakers and advocacy training.


Please see the Hill Day social media toolkit to help spread the word and to share the excitement! Be on the lookout in the coming months for more information on how to apply, and you can read through the CSD's Hill Day 2024 Report here.

QR code

CSD QR Code for Healthcare Professionals and the Community At-Large


The CSD is excited to add this QR code poster to its toolbox of resources for healthcare professionals and the community at-large! This QR code takes a person to the CSD "Member Organizations" page so that they can find a patient organization that supports them and fits their needs. Whether you're a provider that puts this in your waiting room for patients to utilize, an educator that adds this to your school's resource page, or a patient group that posts this on your social media page or community center's bulletin board, this QR code can be shared in countless ways. The CSD seeks to connect those with skin conditions to others in the skin disease community so that patients and caregivers find the support they need and deserve.

image of a man at a computer in a virtual meeting

CSD Participates in FDA Patient Listening Session


Earlier this month, the CSD participated in a Patient Listening Session with the FDA. The virtual meeting convened 5 coalition member organizations along with 12 officials from the FDA’s Office of Generic Drugs and Center for Drug Evaluation and Research (CDER). The CSD’s presentation at the Listening Session highlighted the real-world challenges faced by dermatology patients and will play a critical role in shaping the OGD’s future work.


The CSD plans to continue the work by developing a survey early next year to run in the broader dermatology patient population through our membership. The resulting data and analysis will be presented at a follow up Listening Session. This survey will guide the FDA/CDER’s efforts to ensure the review of generic products is patient-centric.

Header - Legislative & Policy Updates
for graphic design purposes

Coalition Letters of Support


The CSD recently signed onto two new coalition letters of support, both of which seek the inclusion of specific funding priorities in any end-of-year legislative package:


  1. The first coalition letter asks Congress to extend funding for low-income Medicare outreach and enrollment. This "ask" aligns with the CSD's legislative priorities, which includes improving access to care.
  2. The second coalition letter - co-signed by nearly 400 organizations! - urges Congress to include at least $48.9 billion for the National Institutes of Health (NIH) within the Fiscal Year 2025 Labor-Health and Human Services appropriations bill.
Step Up for Patients social media campaign image

Social Media Advocacy Opportunity


The CSD has been busy urging Congress to pass the Safe Step Act before the end of the year - both of which are top CSD legislative priorities!


In fact, the CSD launched a social media campaign earlier this month to make clear to Congress that patients have waited long enough – it’s time to pass this bill. Please see this link for more information about how you can participate in this exciting advocacy opportunity!

image of Rep. Carter (R-GA) and other Members of Congress holding an outdoor press conference near the Capitol building

End of Year Congressional Update


There is much work to be done before the end of the 118th Congress! After passing a short-term continuing resolution (CR), or funding bill, earlier this fall, Congress now faces a looming government funding deadline when the CR expires on December 20. Congress is expected to pass another short-term CR that will expire in March.


Additionally, the CSD is grateful for Rep. Carter's (R-GA) push to pass pharmacy benefit manager (PBM) reform before the end of the year. PBM reform is one of the CSD's legislative priorities; passage of such a bill would lower prescription drug costs and increase access to the medications benefiting the skin disease patient community. Earlier this month, Rep. Carter held a press conference and released a letter urging Congress to pass PBM reform. Both the press conference and the letter were bipartisan efforts.

Header - Learning Opportunities
giving a gift

'Tis the Season! Would you be willing to share resources to help others in the CSD? Many of our members have mentioned how beneficial it would be to have a repository of helpful guides they could glean from to inform their own work and minimize the need to start from scratch, which would save tons of precious time and elevate our whole community.


If you have templates or examples of organizational policies, fundraising strategies, patient

conference planning, email drip campaigns, and the like, please share them! You can easily

upload those documents here.

man talking to doctor

Let My Doctors Decide Survey -

Medicare Part D



The Let My Doctors Decide (LMDD) coalition, of which the CSD is a member, is running a 2-minute survey for patients and caregivers regarding the Medicare Part D prescription plan program. The input received will allow the LMDD to better tell the stories of real patients and their experiences as they try to navigate Medicare. It is vitally important that decision-makers and policy leaders understand how decisions made in Washington impact seniors and the treatments recommended by their doctors. Please access the survey here and feel free to share .

front of NIA's caregiver handbook

Caregiving Toolkit: Information and Resources to Support Caregivers


Millions of people in the U.S. take care of a family member or loved one who has a serious health condition. Although caregiving can be rewarding, it can also be challenging.


The National Institute on Aging (NIA) funds and conducts research on caregiving and provides information based on the latest evidence and expert review.


Explore NIA’s toolkit for caregivers to find articles, print publications, videos, and other resources to help you or someone you know on the caregiving journey.

blocks spelling out "climate change"

Survey Designed to Measure Impact of Climate on Autoimmune Disease


Autoimmune diseases are on the rise, and while genetic factors are known contributors, environmental stressors — including those linked to climate change — may also play a significant role. Severe weather events have been shown to exacerbate symptoms and limit healthcare access, yet data on these specific impacts remain limited. The Autoimmune Association has designed a survey that aims to deepen the understanding of the health effects tied to events like wildfires, heatwaves, and hurricanes.


Please click here to participate or share this survey with your members! Input will help researchers understand how climate change is impacting health outcomes for people with autoimmune diseases, addressing a major knowledge gap.

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info@coalitionofskindiseases.org

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The Coalition of Skin Diseases gratefully acknowledges the generous support of our

Healthcare Industry Partners.