July News

We look forward to seeing you at our Summer Meeting this week

In addition to CSD updates, this meeting will include a presentation by Dianna Campbell from DiCam Strategies, in which she will share recent survey results along with offering recommendations to help shape our future as a coalition. Time for Q&A and discussion among members will be provided.

Calendar Invites have been sent out to CSD member representatives. If you have not received an invite, please reach out to be added. You can also access the meeting link here.

Please welcome our newest CSD staff member, Communications Manager, Natalie Mamerow!

While new to our growing team, Natalie is no stranger to the CSD. As an active Legislative Liaison for CSD member, NAAF, she has served the last 4 years on our Advocacy Task Force.

Natalie, is a motivated, collaborative, and detail-oriented communications and public policy professional who expertly leverages resources to implement innovative policy solutions and to build, execute, and grow engagement strategies within the community.

She has worked as a Legislative Assistant for Congressman Ron Kind (D-WI); as a political appointee in the Obama Administration as an Advisor to the Director of the U.S. Department of Interior’s Bureau of Ocean Energy Management; and as a Senior Government Relations Manager at the American Society of Civil Engineers.

As a person living with alopecia, Natalie strives to make sure that others know they are not alone on their journey and hopes to affect positive change through the power of advocacy. She is eager to use her experience to support alopecians and all those with skin conditions in the community and will be assisting us in areas of administration, outreach, and special projects.

If you know Natalie, you know what a smart, competent, charismatic, and compassionate person she is - we are lucky to have her!

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.

The Pediatric Dermatology Research Alliance (PeDRA) is generously offering CSD Patient Advocacy Groups complimentary registration and exhibit space at their upcoming annual conference at the Sheraton Phoenix Downtown from October 24-26.

The theme for this year’s conference is Innovative Solutions to Advance Pediatric Dermatology Research, and will focus on the tools available to support impactful research and how to use them. The PeDRA Annual Conference is an opportunity to connect and collaborate with dedicated scientists, trainees, industry partners, patients, and advocates to advance research that improves the lives of children with skin diseases and conditions.

PeDRA invites you to join them at this awesome event, which is dedicated to advancing research across all skin diseases and conditions affecting children. For those interested:

• Please register up to two representatives up to two representatives from your organization for free. You'll need to reach out for the discount code.

• PeDRA has several more comped exhibit tables available, which will be provided to patient groups, first-come-first-served basis. Email PeDRA Executive Director, Mike Siegel, if you would like to request exhibit space.

• If you are interested in sponsoring the third Dash for Discovery Fun Run/Walk for $250, your logo will go on the website, signage, and high quality long-sleeve shirts, which people seem to love and wear all the time. To sponsor reach out to Mike Siegel.

• Please spread the word amongst your communities for anyone interested in attending the conference and/or Mini Camp Wonder at PeDRA, being hosted for the fourth time by the Children's Skin Disease Foundation. Note that all PeDRA Community Members are eligible to apply for a travel scholarship, and we hope to give out a ton of travel scholarships.

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.