When our photographer captured this group shot at last month's remarkable CSD Hill Day, he encouraged us to view the image not simply as our faces, but as a reflection of what we were experiencing in that instant: excitement, nervous energy, and hope – the kind of hope that stems from knowing our unified advocacy can create meaningful change. It's also the hope that emerges when we share our distinct yet connected experiences with skin conditions, both among ourselves and with the policymakers we meet.

This year's Hill Day brought together 81 dedicated patient advocates representing 24 states, all speaking with one voice for the 84 million Americans living with skin diseases. These advocates participated in 106 meetings with legislators, delivering a unified message to policymakers: we need improved access to quality healthcare and treatment options for those facing skin disease challenges, along with substantial funding to support research and educational programs in this critical area.

The CSD's Congressional Briefing attracted strong engagement from a wide range of participants, including staff from congressional offices, federal agencies, academic institutions, and private sector organizations. During the briefing, Congressman John Joyce (R-PA) – Congress’s sole dermatologist – delivered extensive remarks that both motivated our advocates and validated the importance of our proposed legislative reforms.

With the addition of a virtual element to our Hill Day this year, those advocates who were unable to join us in person had the opportunity to still make their voices heard. The CSD’s newly developed online action tool generated 144 emails delivered to 81 legislators informing them of the issues skin patients truly care about. We were also thrilled to partner with the Dermatology Nurses’ Association who conducted 11 skin cancer checks for those who serve our nation on the Hill.

Please see here for the CSD Hill Day 2025 Report. The CSD extends its appreciation to all patient advocates who dedicated their personal time to participate, with particular recognition for those members who courageously told their personal stories, truly representing the heart of our mission. We also want to sincerely thank our corporate sponsors; their support allows the CSD to work towards fulfilling its mission of ensuring that all Americans living with dermatological diseases and skin traumas receive the care they need to live healthy and productive lives.

Here's a preview at what you'll find in this month's newsletter:

• CSD Full Summer Meeting - Tuesday, June 24
• CSD Membership Renewals - due by Tuesday, July 1
• CSD Social Media Toolkit for World Skin Health Day - July 8
• CSD Member Empowerment Webinar Series: "Attract, Engage, Retain: Mastering Volunteer Recruitment & Retention in Nonprofits" - Thursday, July 24
• Legislative and Policy Updates
• June is Scleroderma Awareness Month, Vitiligo Awareness Month, Pachyonychia Congenita (PC) Awareness Month, and Hidradenitis Awareness Month, while June 13 is International Albinism Awareness Month, and June 25 is World Vitiligo Day!
• Skin in the News - CSD President and HS Connect Founder & CEO, Brindley Brooks, contributes article for the "Skin Health" campaign in USA Today!

CSD Full Membership Summer Meeting

We invite you to venture outside, pull your chair into the sun (with a bottle of SPF, of course!) and join the CSD for our full membership summer meeting later this month. We're eager to share our recent successes with you, discuss upcoming events and activities, tackle your questions, and listen to your input.

Date: Tuesday, June 24Time: 2PM ET

Virtual link can be found here.

Meeting ID: 827 5092 9934

Passcode: 873673

CSD Membership Renewals



Thank you for being part of the CSD and standing together as one voice for the 84 million Americans with a skin disease. You, our Members, are at the heart of the CSD and why we exist. We invite you to remain a part of this coalition by renewing your CSD membership today. 

We are proud to offer these benefits to our Patient Group Members, Professional Association Members, and Corporate Members.

July 8 is World Skin Health Day

July 8 is World Skin Health Day, and this year’s theme “No Health Without Skin Health” highlights the global effort to ensure that everyone, everywhere, can benefit from greater awareness, education, and equal access to dermatological care. We’re excited to celebrate this day and to help raise awareness through social media!

We've created a brief social media toolkit to help your organization easily post and engage your followers on World Skin Health Day. The toolkit includes different social media posts - each with an accompanying graphic - to choose from; feel free to post one or post all on World Skin Health Day (July 8)!

Additionally, the CSD would like to post social media "stories" on July 8 of our member organizations' patient advocates to promote the amazing work you're doing! To be included in this campaign, please:



• Identify a patient advocate within your community who is comfortable sharing their (brief!) skin journey with the world.
• Ask the patient advocate to film a 30 second video answering the prompt "What does skin health mean to you?"
• Send the patient advocate's video to Natalie Mamerow (CSD's Communications Manager) by close of business Monday, July 7. The CSD will edit the footage to include both the CSD logo and your organization's logo.
• Look for your patient's social media story on CSD's social media pages on July 8, and share with your followers!

Please don't hesitate to reach out to Natalie with any questions.

CSD Member Empowerment Series - "Attract, Engage, Retain: Mastering Volunteer Recruitment & Retention in Nonprofits"

We are thrilled to invite you to join the first webinar of our Member Empowerment Series on Thursday, July 24 entitled "Attract, Engage, Retain: Mastering Volunteer Recruitment & Retention in Nonprofits." Lisa-Marie Haygood, the Executive Director of the Cherokee County Educational Foundation since 2017, will share her knowledge on:

• Where and How to Find the Right Volunteers
• How to Keep Volunteers Engaged and Motivated
• Why Volunteers Leave—and How to Prevent It

What: CSD Member Empowerment Series - "Attract, Engage, Retain: Mastering Volunteer Recruitment & Retention in Nonprofits"

Date: Thursday, July 24

Time: 2PM - 3PM ET

Register HERE!

CSD Signs onto Letters to Congress

The CSD recently signed onto four coalition letters to Congress:

The first letter, led by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition, was co-signed by nearly 40 organizations and was sent to Senate and House Appropriations Subcommittee on Labor, Health, and Human Services and Related Agencies. The letter requests that NIAMS be funded at $747 million in FY26.

The second set of letters, led by the Infectious Diseases Society of America, was co-signed by over 130 organizations and was sent to the House and Senate Appropriations Committees. The letters request increased funding for antimicrobial resistance (AMR) programs in FY26 and states that "AMR contributes to more than 160,000 deaths in the United States each year. If we do not act now, by 2050 antimicrobial-resistant infections are expected be a leading cause of death globally."

The third letter, led by Research!America, was co-signed by 500 organizations and 2,355 individuals and was sent to the House and Senate Appropriations Committee. The letter expresses concern with President Trump's Fy26 Budget Request, which includes an $18 billion cut to the National Institutes of Health (NIH).

The fourth letter, led by CRD Associates, was co-signed by over 100 organizations and was sent to Congressional leadership. The letter expresses concerns that FY25 appropriated research funds are inaccessible; that NIH restructuring is taking place without transparency; and that NIH funding cuts will end U.S. leadership in medical research.

National Advisory Council for Complementary and Integrative Health

Save the date for the next meeting of the National Advisory Council for Complementary and Integrative Health (NACCIH). Members of the public can watch the Open Session on NIH Videocast. 

Any interested person may file written comments with the committee by forwarding the statement to Dr. Martina Schmidt (schmidma@mail.nih.gov). The statement should be less than 700 words in length, and should include the name, email address, telephone number, and the business or professional affiliation if applicable. Written comments must be submitted by June 17, 2025 (14 days before the Council meeting).

Date: Tuesday, July 1, 2025

Time: 1:00 - 5:00PM ET

Virtual link can be found here.

Rare Artist 2025 is now Open for Submissions 

The Rare Artist program, powered by the EveryLife Foundation for Rare Diseases, was established in 2010 to showcase the talents of those impacted by rare diseases. The annual contest provides a national platform for artists to advocate through music, poetry, and visual artwork.

 This year's medium is music, which has the power to move hearts and activate change, and now it’s another way to raise your voice for rare disease advocacy. Whether it’s a song about your personal journey or an anthem for our community, your music can help others feel seen, heard, and understood.

The contest is open to anyone in the U.S. who has a rare disease or is connected to someone who does, and the deadline for submissions is Wednesday, July 9. For a full list of guidelines visit RareArtist.org.

June is Scleroderma Awareness Month

In 2025, the National Scleroderma Foundation is honoring the strength and resilience of the scleroderma community through this year’s theme: Stories of Strength.

Throughout the month, the Foundation is inviting individuals affected by scleroderma to share their stories, photos, and messages to help raise awareness and inspire others.

This national campaign is about connection, visibility, and education. Through a series of awareness and advocacy activities, the Foundation aims to bring scleroderma to the forefront of public conversation. From participating in Stepping Out to Cure Scleroderma walks to joining the Foundation’s #TealTalk series, there are many ways to get involved. Please see here for more information on how to show your support during Scleroderma Awareness Month and all year round!

June is Vitiligo Awareness Month

June 18 is International Albinism Awareness Day

June 25 is World Vitiligo Day

We're thrilled to support the amazing work that CSD members are doing for Vitiligo Awareness Month in June, International Albinism Awareness Day on June 18, and World Vitiligo Day on June 25!

Please see here to learn more about Massé World's actions during June and how it helps fulfill their mission of "a world where skin differences are not a barrier, but a source of strength." 

CSD members Beautifully Unblemished Vitiligo Support Group and the Global Vitiligo Foundation are hosting the World Vitiligo Day USA Conference in Tampa, Florida from June 27 - 29. This one-of-a-kind weekend is dedicated to connection, education, and empowerment and brings together individuals with vitiligo, their families, dermatologists, mental health professionals, and advocates from around the country. You’ll experience powerful storytelling, expert-led learning, and opportunities to build lifelong community — all in a city known for sunshine, energy, and heart.

Healthcare professionals and patients are also invited to the Vitiligo Physician Education Summit (June 27–28)—an educational event featuring leading experts in vitiligo research and treatment.

Whether you live with vitiligo, support someone who does, or treat the condition, this is your moment to learn, connect, and lead change.

Please see here for more information and registration!

June is Hidradenitis Suppurativa Awareness Month

The CSD is proud to showcase the amazing work being done HS Foundation and HS Connect during June's Hidradenitis Suppurativa Awareness Month:

HS Foundation is a nonprofit dedicated to improving the lives of people affected by Hidradenitis Suppurativa (HS). During the first week of June, HS Awareness Week, we aim to increase recognition of HS and highlight resources to help patients on their HS journey. Visit hs-foundation.org for educational videos, an HS provider database, research summaries, and patient guides. To get access to the latest resources, up-to-date research findings, inspiring patient stories, and more, follow @hsforg on Instagram. Congratulations to HS Foundation on 20 years of research, education, and advocacy!

HS Connect celebrated HS Awareness Week with engaging events and initiatives. The week started with our HS 5K, Walk, Move or Mingle on June 1st, followed by the recording of new seasons for our Hidradenitis Suppurativa, HS Brotherhood, and Healing Space podcasts. We wrapped up the week with our inaugural HS Connecting Pop-Up event in Detroit, where we proudly launched the Brotherhood podcast!

In addition to these activities, our Healing Space Mental Health Program continues to thrive. Our support groups—HS Brotherhood, HS RealTalk (for teens), and HS Parent Network—offer vital spaces for individuals and families to connect and find support. 

Don’t miss our upcoming Empower HS: Knowledge and Advocacy Workshop in Nashville from November 2-4! Join us for an enriching experience focused on knowledge sharing and advocacy.

Stay tuned for more updates, and thank you for being part of our community at HS Connect!

June is Pachyonychia Congenita (PC) Awareness Month

June is PC Awareness Month — and it’s time to speak up.

For many living with Pachyonychia Congenita (PC), the pain goes far beyond the physical impact of feeling pain with every step. There’s the emotional toll of hiding, the isolation of feeling misunderstood, and the fear of rejection – all things that happen regularly in our community. Too often, PC warriors suffer in silence just to “fit in” - pretending to be okay when they’re not.

But this month, we’re changing that. The theme for PC Awareness Month is #EndThePain — not just the pain of blistered feet, bleeding calluses, and thickened nails, but the pain of embarrassment, shame, and invisibility.

We’re inviting everyone in our community to tell the truth about PC and help raise awareness. The more people understand this disease, the closer we get to compassion, connection, and ultimately real solutions.

And thanks to a generous donor, all gifts to PC Project during the money of June will be matched twice. https://hope.pachyonychia.org/donate_paypal/

Thank you for spreading awareness of PC. Let’s #EndThePain together.

CSD President and HS Connect Founder & CEO Pens Article for "Skin Health" Campaign

CSD President and HS Connect Founder & CEO, Brindley Brooks, contributed an article entitled "Scars We Don’t See: Standing Up for Those Living with Skin Conditions" for the "Skin Health" campaign in the May 30 edition of USA Today! Brindley bravely shares her story with hidradenitis suppurativa (HS) and declares that at the CSD, "Our goal is to transform perceptions, turning “imperfect” into “I’m perfect” — a message of empowerment and acceptance for all individuals affected by skin conditions... Together, we can create a more inclusive and supportive society where everyone is valued regardless of the condition of their skin."

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

Healthcare Industry Partners.