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Hello, Autumn! As summer ends and fall begins, you may find yourself reflecting on the season of your own life. Perhaps one chapter has closed and another is opening. Maybe you're in the middle of a difficult season.
Whatever season you find yourself in, know that the skin disease community is here to support you. Here is a sneak peak at this month's newsletter and the many ways you can receive or offer your support:
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Fall Quarterly Meeting this Tuesday, September 17 at 2:00 pm EST.
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CSD Advocacy Survey - please complete by September 20!
- Legislative and Policy Update
- Upcoming Conferences - CSD Presence and Open Invites
- Patient Group Learning and Engagement Opportunities
- Skin Awareness Months
- Skin in the News
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Join your fellow CSD Members this Tuesday at 2:00 pm EST for our Fall Quarterly Meeting!
We will be hearing from our new Committee Chairs and will be providing updates for the coming months. All members should have received a calendar invite. You can also access the meeting here. Hope to see you there!
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CSD Patient Groups: Please fill out out our Advocacy Priorities Survey to inform which policy issues the Coalition will focus on in our 2025 advocacy efforts.
One representative per member organization will have an opportunity to respond through September 20th, COB. Please answer thoughtfully on behalf of the patient population you represent as an organization.
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Legislative and Policy Updates | |
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Congress Faces End of Month Funding Deadline
Federal legislators returned to Capitol Hill earlier this month to a looming government funding deadline of October 1 (the start of the government's fiscal year). Congress must vote each year on twelve appropriations bills in order to keep the government funded. House Republicans recently released legislation for a short term stopgap funding measure (also known as a "continuing resolution," or "CR"). This bill would fund the government through the end of March 2025. Both House and Senate Democratic leaders, as well as the White House, have publicly opposed this legislation. Any forthcoming continuing resolution will likely push the funding deadline three or six months into the future.
Earlier this year, the CSD submitted congressional testimony to the House Committee on Appropriations Subcommittee on Labor, Health, and Human Services with its funding priorities for Fiscal Year 2024. Read the CSD's full testimony here.
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Supporting the PASTEUR Act
Earlier this month, the CSD signed onto a coalition letter in support of the Pioneering Antimicrobial Subscriptions To End Upsurging Resistance (PASTEUR) Act (H.R. 2940 / S. 1355). (Letters of support were sent to House leadership, Senate leadership, the House Committee on Energy & Commerce, and the Senate Committee on Health, Education, Labor, and Pensions.) This bipartisan legislation would encourage innovative drug development targeting the most threatening infections, improve the appropriate use of antibiotics, and ensure domestic availability of antibiotics when needed. Importantly, the PASTEUR Act would positively affect the skin disease community by improving patient outcomes for people most at risk for antimicrobial resistance, including those with serious, chronic health conditions.
The CSD signed onto similar letters of support in 2022 and 2023 and urges Congress to move this legislation forward in order to help protect the millions of Americans, including those with skin conditions, who are at high risk for AMR.
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Upcoming Conferences - CSD Presence and Open Invites
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Autoimmune Community Summit
The CSD will have a virtual exhibit at the Autoimmune Community Summit on Thursday, October 17 and Friday, October 18, 2024. Hear from physicians, researchers, mental health professionals, policy leaders, patient advocates, and other experts while gaining valuable insights on the most pressing issues impacting the autoimmune community.
- Date: Thursday, October 17 and Friday, October 18, 2024
- Time: 11:00AM - 3:00PM ET
- Location: Virtual
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Register here for free!
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The CSD is looking forward to exhibiting once again at the Pediatric Dermatology Research Alliance (PeDRA) upcoming annual conference from October 24-26 in Phoenix, Arizona. 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 generously invites our members to join them for this awesome event, which is dedicated to advancing research across all skin diseases and conditions affecting children.
- Date: Thursday, October 24 through Saturday, October 26, 2024
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Location: Phoenix, Arizona
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Register here!
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Patient Group Learning and Engagement Opportunities | |
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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.
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FDA Webinars and Engagement Opportunities | |
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Patient Prior Authorization Survey
The Autoimmune Association, in partnership with the State Access to Innovative Medicines Coalition, is looking for patients to provide their feedback on their experiences with prior authorization to better inform future health care policy.
The patient survey can be found here, while the provider survey can be found here.
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Additional Patient Resources
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Blood Cancer Awareness Month
September is Blood Cancer Awareness Month, which includes cutaneous lymphoma, and September 15 is World Lymphoma Day. Please visit the Cutaneous Lymphoma Foundation's website to find ways to support those with cutaneous lymphoma this month and beyond.
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1717 N Street NW, Washington DC, 20036
info@coalitionofskindiseases.org
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The Coalition of Skin Diseases gratefully acknowledges the generous support of our
Healthcare Industry Partners.
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