June News

Wishing all of our Coalition Members a great start to the Summer!

We hope you are getting time to do all your favorite outdoor activities and soaking in all this season has to offer.

Please Save the Date for our Summer Quarterly Meeting taking place on

July 18th at 2 pm EST.

Calendar Invites with be sent out 2 weeks before the meeting.

You can also access the meeting link here.

KEEP AN EYE OUT THIS WEEK: The CSD Board is thrilled to announce our collaboration with the exceptional consultant, DiCam Strategic Solutions, in creating a comprehensive survey aimed at elevating our work and extending our impact.

We are asking that 2 representatives from every patient group actively participate to provide their invaluable input, as we firmly believe that the success of this coalition hinges on the fusion of our collective efforts, unique perspectives, diverse skills, and vast experiences.

Expect the survey link to arrive directly from DiCam. Be sure to keep an eye out for that email, click the link, and generously share your thoughts and vision. Together, let's strive to propel this group to new levels of influence in effecting positive change for those we serve!

FDA Patient Listening Session Opportunity

The Office of Generic Drugs at FDA is planning a virtual Internally - Led Patient Listening Session and is looking to our Coalition to provide patient perspective. The focus of the session will be on patient experiences transitioning from brand-name products to generic drug products, specifically within the scope of skin and dermal ailments. Their aim is to gain a deeper understanding of the challenges patients face during these substitutions, as well as their perceptions of the efficacy and safety of generic drugs. 

If your patient population is facing this issue and you are interested in participating as an organization, please reach out and let us know. We will be having an informational call July 10 at 11 am EST.

Make a difference in the life of a child living with a chronic skin condition!

This summer, the American Academy of Dermatology (AAD) is sponsoring six (6) one-week sessions of Camp Discovery -- a camp designed specifically to meet the medical needs of kids living with chronic skin conditions such as eczema, psoriasis, vitiligo, alopecia, epidermolysis bullosa, ichthyosis, or any other dermatologic condition that creates an impact on a child’s ability to actively participate in activities/events with their peers.

Provided at no cost to families (including airfare), kids from across the United States, and around the world, attend Camp Discovery to experience an adventure filled with fun, friendship, and personal growth. This unique program provides a safe environment that enables and encourages kids to explore and participate in activities such as fishing, swimming, archery, horseback riding, nature trails, and more. Mastering a new skill, or simply trying something new, Camp Discovery can help your child build strength, resilience, and confidence.

Surrounded by peers who also are living with dermatologic disease, amazing counselors, and a dedicated and caring medical staff - Camp Discovery enables kids to be kids, and simply have fun, in a place where they are understood, they look and feel like everyone else, and their diagnosis is not a barrier.

Referrals are made by the child’s dermatologist. You can find the referral form here.

If you have further questions, visit our Frequently Asked Questions or reach directly to Janine Mueller, Camp Discovery Specialist.

“…seeing other kids with skin disease who were confident and happy showed me that I could be confident and happy with my skin disease, too.” Camper S. – 12 years old

The CSD is expanding our reach this year to exhibit at the American Academy of Family Physicians (AAFP) FMX annual meeting, SOAR. Did you know that 2/3 of dermatology patients see family physicians? We need to get in front of this group and make them aware of the great resources found in our patient organizations!!

If you are interested in helping "man" the booth and gaining more connections with these doctors, reach out and let us know. We have 2 spaces left to fill!

Calling All Patient Groups:

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.

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

Healthcare Industry Partners.