Coalition of Skin Diseases

We know that our skin disease community is stronger when we come together - sharing our lived experiences, resources, and collective strength. 🤝 Below, please see a list of some of the FDA's current and upcoming resources:

📌Toward a National Action Plan for Achieving Diversity in Clinical Trials https://bit.ly/3Z2XNJj

📌Webinar: FDA | NIH: Regulatory Do’s and Don’ts: Tips from FDA https://bit.ly/3T898Uu
•Wednesday, September 4, 2024
•11:00AM - 3:00PM EST
•Register here for free https://adobe.ly/4g242mM

📌In-person or virtual: 2024 FDA Oncology Center of Excellence Pediatric Advocacy Forum https://bit.ly/4cOqnBk
•Tuesday, October 15, 2024
•9:00AM - 1:00PM EST
•Register here for free for in-person (registration closes on October 7) https://bit.ly/4g3wuV9
•Register here for free for virtual (registration open through October 15) https://bit.ly/3AIwHNA

August is Psoriasis Action Month. Over 125 million people worldwide live with psoriasis, each with their own unique story.

We want to hear yours. Use the hashtag and show us your definition of psoriasis, or DM us to get featured on our account.

Visit our website to find all the resources you need to best manage your psoriatic disease. psoriasis.org/psoriasis-action-month/

Have you been denied access to the treatment you need to manage your skin condition?

Learn how you can file an insurance complaint in your state in this guide: https://bit.ly/3LEPifC

Come see us at the American Academy of Family Physicians SOAR conference!

Register for FMX Phoenix | 24-28 Sept It’s time to spread your wings and forge a new path for family medicine.

It's been a whole lot of science and a whole lot of fun at the Society of Investigative Dermatology (SID) Annual Meeting this week!

CSD and its members are exhibiting on behalf of our organizations and the patients we serve. The goal is to learn, build relationships, and collaborate with those in research to improve the lives of those with skin conditions.

The science of dermatology is constantly evolving, and with it comes continued discovery that provides hope for patients and a better, more healthy future. It's exciting to be a part of this community that is dedicated to advancing the field and making a positive impact on the lives of others.

Reflecting on the recent CSD Hill Day, it is truly inspiring to see how much progress we have made, yet it is only the beginning of our journey together to push forward positive change for dermatology patients!

https://youtu.be/LGW27daeZkE

CSD Hill Day Montage On April 21-23, 2024, the Coalition of Skin Diseases hosted a Capitol Hill Day fly-in and Congressional Briefing on Understanding and Addressing the Burden o...

Learning and participating this week in the discussion around promoting Health Equity. It's essential that we work together as patient advocacy groups, medical providers, pharmaceutical manufacturers, insurance companies, researchers and policy makers to provide better healthcare for those we represent and serve.

It was an amazing time together on Capitol Hill with this stellar groups of patient advocates, raising the profile of skin disease and the needs of the 84 million+ Americans living with a skin condition!

Members of the CSD advocated for reform in insurance protocols, more transparency with Pharmacy Benefit Managers, funding for dermatological research and better access to medicines for rare conditions.

It’s going to be a great day! Advocating on behalf of the 84+ million Americans living with a skin disease 🙌

CSD Member, Foundation for Ichthyosis and Related Skin Types (FIRST) is committed to funding basic and clinical research studies to promote and strengthen investigation into the causes, treatments, and potential cures for ichthyosis.

FIRST is inviting letters of intent for the 2023 FIRST Research Grant Program until April 14, 2024. Please see their website for further details.

https://www.firstskinfoundation.org/first-research-grant-program

Thanks to the Biden administration for dropping their appeal challenging a recent court ruling, which would improve access to medicines for people living with chronic skin conditions.

We now urge the administration to enforce the court’s decision.
Learn more here:

allcopayscount.org

CSD was honored to participate in the Skin of Color Society's "Meeting the Challenge Summit: Population Descriptors in Dermatology Research Studies," by providing patient perspective to the discussion.

Recognizing a clear and unmet need for demographic descriptors that best describe the populations under study, the objectives of the summit were to:

*Examine the use of demographic descriptors in dermatology and why they are needed;

*Develop a framework for guidelines and recommendations on how to use demographic descriptors in research studies and clinical practice and;

*Develop strategies for implementation and dissemination to the broader dermatologic community.

To learn more visit: https://skinofcolorsociety.org/2023-meeting-the-challenge-summit/

📢 Save the Date: World Psychodermatology Day

Join us on November 18 for a groundbreaking event that explores the mind-skin connection in skin diseases. Discover the impact of psychological and psychiatric factors, hear from distinguished speakers, and engage in thought-provoking discussions. Don't miss this opportunity to revolutionize the field of dermatology and psychiatry.

Click here to register: https://global-dermatology.com/events/world-psychodermatology-day_20231118/

Wrapped up a productive 3 days exhibiting at the Pediatric Dermatology Research Alliance Annual Conference. Always inspired and challenged by this group that works hard to ensure patients are engaged with and at the center of research.

The CSD is one of 100 patient and provider organizations asking Congress to pass PBM reform and include the to help patients directly. Let's put patients first!

prismic-io.s3.amazonaws.com

November is Hyperhidrosis Awareness Month!

Did you know 385 million people worldwide live with hyperhidrosis, an underserved medical condition (with 27% of adults NEVER diagnosed!) that nearly TRIPLES anxiety and depression risks.

The impacts of hyperhidrosis’ uncontrollable and unpredictable sweating range from:

Feelings of intense discomfort due to wet clothing, dripping perspiration, slippery skin, and chilling dampness, to...
Stigma, embarrassment and significantly increased risks of depression, anxiety and attention deficit disorder.

Together with its community, the International Hyperhidrosis Society is working to lift hyperhidrosis out of hiding so that people experiencing the condition can find treatment.

Click here to learn more: https://www.sweathelp.org/home/news-blog/541-can-you-really-sweat-out-toxins-does-sweat-really-stink.html

CSD member, Global Parents for Eczema Research, is gearing up for another amazing symposium this year. We encourage you to join their 2023 Childhood Eczema Prevention Annual Symposium to learn about The New Science of Skin Barrier Damage and Repair: Implications for Pediatric Atopic Dermatitis

For more information, click the following link: https://www.parentsforeczemaresearch.com/symposium

A wonderful video for patients, created by one of our affiliate members, the Skin of Color Society

Big Takeaways from the SOCS Experts Leading Skin of Color Society experts share their key takeaway messages for patients of color! Hear from Dr. Susan Taylor, Dr. Andrew Alexis, Dr. Valerie Har...

What an incredible Outreach and Education Day hosted by the NIAMS Coalition, getting an overview and update of NIAMS programs and learning of ways our patient groups can engage in scientific research for skin disease.

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CSD member, Made A Masterpiece, has created a School Coping Plan for caregivers and teachers of children living with a skin disease. Please utilize and share this great resource to help our kids navigate life in the classroom this coming school year!

Coping Plan When someone looks different, unfortunately they are particularly vulnerable to bullying or unkind words from classmates. This plan is intended to help parents, counselors, and teachers work together to identify coping techniques that will help the student, but also help educate classmates to be mor...

“Skin: Our Barrier to the World” is a 10-minute documentary made by people with Atopic Eczema. Please watch and to join the campaign in helping more people around the world understand the true impact of Atopic Eczema.

Atopic Eczema Documentary: Skin Our Barrier to the World A GlobalSkin premieres an impactful documentary, "Skin: Our Barrier to the World" that gives an intimate glimpse into the lives of people living with Atopic ...

We hope you will join us at the PeDRA Annual Conference in Atlanta! There is a special opportunity for kids living with skin conditions to participate in Camp Wonder at the event - see details below:

🎉 PeDRA is thrilled to welcome back Children's Skin Disease Foundation/Camp Wonder to host Camp Wonder at PeDRA during the 11th PeDRA Annual Conference in Atlanta, GA. Camp will be held from 3-5PM ET on Friday, November 10, 2023.

CSDF has been running the full Camp Wonder since 2001 as a week-long escape for children with chronic and life-threatening skin diseases to take a break from being a patient and focus on being a kid. Campers between the ages of 6 and 17 can spend the afternoon making connections, playing games, doing STEM projects, and more!

Not local to Atlanta? We’ve got you covered! Families are eligible for travel scholarships! The deadline to register for this FREE, kids-only event and apply for a travel scholarship is Thursday, September 14.

Learn more and register today 👇
https://pedraresearch.org/2023-annual-conference-registration-and-applications/ -wonder

The CSD is a proud member of IVI and honored to have a seat on their Patient Advisory Council, which is working hard to help improve Health Equity.

Non-medical switching occurs when an insurer changes a stable patient’s treatment for non-medical reasons. When patients lose access to their prescribed treatment, they may:

*Experience re-emerging symptoms
*Face worsening or spreading of skin conditions
*Suffer side effects from their new medication

Patients are the HEART of healthcare. As such, we must ensure that their needs are put before profits.

The impact of skin disease cannot be overstated. Now impacting more than 25% of the population, we must understand its burden to truly address the challenges.

We invite you to listen as our members share what it's like to live with a skin condition, and ask yourself, what is my part to play?

https://youtu.be/iQXLdXTN0Yk

Attention dermatology groups and patients – GlobalSkin needs your help to collect data on the impact of living with dermatological conditions.

This survey will only take 10 –20 minutes of your time and will help to validate the very real and difficult challenges faced by dermatology patients globally. Please join us in sharing your experience and improving care by clicking the link below!

https://globalskin.org/GRIDDStudy

It was a fantastic time of learning, connecting and collaborating at the Globalskin ELEVATE conference 2023 in Brussels, Belguim. We had a great representation of CSD members!

The CSD was invited to join to learn more about the focus of NIH on pediatric skin disease and opportunities to collaborate. Engaging the patient perspective was highlighted as an important element of research, and we are grateful to be a part of that!

A successful day on the Hill with over 40 advocates and 80 meetings with our federal legislators!

Patient advocates specifically asked for support of the and HELP Copays Act, which improve access to treatments for patients, along with robust funding for the NIH/NIAMS dedicated to dermatology research and for the CDC’s chronic disease awareness and education program.

While on Capitol Hill, the CSD also hosted a briefing highlighting the Impact of Skin Disease, current challenges and how Congress can help.