Countdown to the CSD Hill Day event: just THREE DAYS away! Starting this Sunday (May 18), we'll be joining hands and voices with nearly 100 patient advocates in Washington, D.C. to advocate on behalf of the 84 million Americans with a skin disease. Our collective voice ensures that we, as a skin disease community, have a seat at the policy-making table.

We have a packed agenda that includes a day of advocacy training, social events to get to know our fellow skin disease advocates, and then an exciting day on Tuesday (May 20) where we'll be meeting with our Members of Congress to share our personal skin disease stories and to ask for support of the CSD's legislative priorities. During the lunch hour on May 20, we'll be hosting a congressional briefing entitled “Skin Disease: How Science, PBMs, and Access to Care are Impacting the Lives of 84 Million Americans" where we'll hear from amazing patient advocates and prominent researchers and providers. And we're thrilled to have the Dermatology Nurses' Association with us to provide free skin checks on the Hill for Members of Congress and their staff!

In the words of Mother Theresa, "I alone cannot change the world, but I can cast a stone across the waters to create many ripples." This CSD Hill Day, our skin disease advocates will each throw a stone across the waters — each and every one of us creating many ripples that will join together in a tidal wave of change. We can't wait to see you there!

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

• Congressional Briefing Invitation - please share wide and far with your networks!
• Upcoming Conferences: PCORI Annual Meeting (October 21 - 222)
• Legislative and Policy Updates
• Sharing Your "Superpowers" With the Skin Disease Community
• May is Allergy & Asthma Awareness Month and May 18 is Global Porphyria Day!
• Skin in the News

CSD Hill Day Congressional Briefing

The CSD is grateful for such an amazing lineup of speakers at the CSD Hill Day Congressional Briefing in Washington, D.C.! The briefing, held on Tuesday, May 20 from 12PM - 1PM in the Cannon Caucus Room of Capitol Hill, will feature inspiring skin disease patient advocates and prominent researchers and providers. This is an incredible opportunity to educate and bring awareness of skin disease to Members of Congress, their staffers, and federal agency employees. Please share this invite far and wide with your networks!

We're thrilled to have the Dermatology Nurses' Association with us providing free skin checks on the Hill for Members and their staff from 1-4PM in Cannon Room 401.

GlobalSkin Conference in Prague

The CSD was grateful to attend the International Alliance of Dermatology Patient Organizations - GlobalSkin Conference in Prague last month! The packed schedule offered valuable opportunities to connect with fellow international patient advocates, enhancing our collective ability to support those living with skin conditions through learning and collaboration.

The conference content was exceptionally relevant — focusing on leadership empowerment, addressing the critical mental health challenges and stigma associated with skin diseases, raising awareness about the harmful effects of skin lightening products, and strengthening organizational development.

We enjoyed traditional Czech food with both new connections and longtime colleagues, perfectly rounding out a productive and inspiring gathering of the global dermatology patient advocacy community. #GSChampion2025

Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting: Scholarships for Patients, Caregivers and PCORI Ambassadors

The 2025 PCORI Annual Meeting, the premier event in patient-centered comparative clinical effectiveness research, is being held in Washington, D.C. this fall. This two-day program brings together patients, caregivers and the broader healthcare community to learn about the latest findings from PCORI-funded research and research-related projects, network and share in rich discussions to advance patient-centered research. Scholarships are available for patients and caregivers to attend.

When: Tuesday, October 21 - Wednesday, October 22

Where: Washington, D.C.

Apply here by Wednesday, June 4!

CSD Joins Letter to Congress: Budget Concerns

The CSD recently joined over 500 organizations in signing onto a letter to Congress. The letter, led by the Coalition for Health Funding, was sent to the House and Senate Appropriations Committees with concerns over the Administration's draft Fiscal Year 2026 budget for the Department of Health & Human Services (HHS). Last month, a copy of the Administration's preliminary FY26 Budget Request was released, which includes a $20 billion (or roughly 40 percent) cut to the National Institutes of Health (NIH).

The CSD supports robust funding for the NIH and CDC in FY26 and sent letters earlier this year with these funding request to both the House and Senate Appropriations Committees. CSD patient advocates will also be making this request at our upcoming Hill Day event.

HHS Announces Change to Grants Policy

Last month, the HHS issued a new grants policy statement. Among significant changes to the policy, HHS states that recipients who receive a federal grant award will not “operate any programs that advance or promote DEI, DEIA, or discriminatory equity ideology in violation of Federal anti-discrimination laws” or engage in a “discriminatory prohibited boycott” during the term of the award and that HHS “reserves the right to terminate financial assistance awards and claw back all funds” if these conditions are not met. While the HHS policy is not applicable to NIH grants, the NIH released a similar update as HHS to their term and condition of award.

Would you be willing to share to help others in the CSD?

During the CSD's Development Day on March 8, we discussed each of our individual "superpowers" and how we can share those strengths with others in the skin disease community.

Additionally, 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 would like to be paired with another CSD member to share your "superpower," and/or if you are in need of another members' "superpower," please let us know! Finally, 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. If you are unsure if the resource would be useful or not, just ask! We're here to help.

CSD Patient Conference Steering Committee

The CSD is beginning to prepare for the CSD Patient Conference in the Fall of 2026! Would you like to join the CSD Patient Steering Committee? If so, please email Natalie Mamerow, CSD Communications Manager. Your engagement on the committee will help shape the backbone and spirit of this inaugural conference!

National Arthritis and Musculoskeletal and Skin Diseases Advisory Council

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) invites you to their Advisory Council on Tuesday, June 3. Please see below for more information:

Date: Tuesday, June 3, 2025

Time: 9:30AM - 1:15PM ET

Format: Virtual and In-Person

Virtual link can be found here.

In-Person Location: National Institutes of Health, Building 31, 6C Rooms A, B, and C, 31 Center Drive, Bethesda, MD 20892

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.

Give Your Families the Gift of Camp Discovery

We know how important it is for kids with skin disease to feel confident, connected, and cared for. That’s why we’re proud to share the American Academy of Dermatology's Camp Discovery, a one-of-a-kind summer camp experience designed especially for children living with chronic skin conditions.

Led by board-certified dermatologists and staffed with licensed medical professionals, Camp Discovery is safe, free of charge, and medically supported. But most importantly, it’s a place where kids can just be kids; building friendships, trying new activities, and seeing themselves reflected in the campers around them.

Camper travel is covered for all camps (except Arizona) and registration is open now. It’s easier than ever for families to get started with signing up - just share these links:

• Camper Registration Here
• Learn More Here

We’re asking for your help to spread the word to families in your community. If you know a child who could benefit from this empowering experience, please encourage them to apply.

Together, we can give more kids the chance to belong, connect, and shine. 

Global Porphyria Day is May 18

Global Porphyria Day (GPD) is observed annually on May 18 to raise awareness, share patient stories, and advocate for earlier diagnosis and better care for those living with porphyria. The United Porphyrias Association (UPA) leads this international effort to unite the community around a common goal: a world free from the pain and challenges of porphyria.

This year, UPA is highlighting the painful realities of porphyria through the #RealPeopleRealPain Challenge, encouraging the sharing of personal stories and imagery to educate and connect with a broader audience.

Participants will also celebrate by Turning Purple for Porphyria, wearing purple, lighting homes and landmarks in purple, and sharing awareness efforts across social media using #PurpleforPorphyria.

More information is available at porphyria.org.

May is National Asthma and Allergy Awareness Month!

Let’s come together to raise awareness and take action to support people living with asthma and allergies, including atopic dermatitis and chronic urticaria. More than 28 million Americans have asthma and 80+ million have allergies, including those at risk for severe or life-threatening allergic reactions. Allergy & Asthma Network is the leading nonprofit patient outreach, education, advocacy and research organization for people with these conditions. When patients and caregivers understand how to manage asthma, allergies and skin conditions, they are more likely to avoid what triggers symptoms, use medications correctly, and keep symptoms under control.

This year, Allergy & Asthma Network is celebrating its 40th anniversary with the theme “40 Years of Advocacy, Awareness and Impact.” Advocacy is core to our mission. Every May, we head to Capitol Hill in Washington, DC, to meet with members of Congress and urge passage of legislation that supports patients. This year is especially critical as the government implements staff and funding cuts to federal programs that support disease education, innovation and research. Join us as we advocate for a healthier tomorrow. Visit our website at AllergyAsthmaNetwork.org, learn more about our advocacy initiatives, and spread our message using our Social Media Toolkit.

Hats on Challenge for Actinic Keratosis (AK) Global Awareness Day

May 24 is Actinic Keratosis (AK) Global Awareness Day! AK common condition that affects millions of people worldwide and is a rough, scaly patch on the skin caused by years of sun exposure. If left untreated, AK can develop into squamous cell carcinoma, a type of skin cancer.

The Hats On Challenge is a social media initiative supporting the work of The Skin Cancer Foundation and Euromelanoma. It encourages participants to wear a hat, post a video or photo, and use the hashtags #HatsOnForAK, #GlobalAKDay, #GuardYourSkin’sMemories, and #ActinicKeratosis to spread awareness about skin protection, highlight early signs of AK, and reinforce the importance of timely treatment.

How You Can Participate

Wear a Hat: Show your support by wearing a hat and taking a photo or video.

Post on Social Media: Share your photo or video on social media using the hashtags #HatsOnForAK, #GlobalAKDay, #GuardYourSkinsMemories, and #ActinicKeratosis and tagging @SkinCancerFoundation. 

Challenge Others: Encourage your colleagues, friends, and followers to join the challenge and spread the word.

Please see here for more information about the Hat's On Challenge.

• Woman with vitiligo shares her story of singing to Pope Francis in 2015.

• Marathoner with sarcoidosis runs in the London Marathon for Sarcoidosis UK to " "help find a cure for the next generation".

• NFL prospect Landon Jackson supports children with alopecia. 

• Felicity and Heroes star Greg Grunberg reveals why he is suddenly bald: 'I just wanted to address this.' 

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

Healthcare Industry Partners.