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The emergence of Punxsutawney Phil earlier this month signaled the halfway point between winter and spring! Unsurprisingly, Phil's predications since 1887 - six more weeks of winter if he sees his shadow! - have proven correct only 40% of the time. But the one thing we all can learn from that meteorologically-minded groundhog is to move through the world with a sense of playfulness and wonder. Many people with skin diseases face huge physical, financial, and emotional obstacles; here at the CSD we seek to foster hope - paired with action - within the skin disease community.
As we noted in our January e-newsletter, we hope you'll leave behind what doesn't serve you in 2025 (ie. the groundhog's prediction of six more weeks of winter), and carry with you the things that bring you joy (ie. the silliness of a groundhog predicting the weather!).
Here's a preview at what you'll find in this month's newsletter:
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Registration is now open for the CSD 2025 Hill Day from May 18 - 20!
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Submit a personal story for the CSD 2025 Hill Day
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CSD at the AAD: Development Day and Skin Matters Reception
- Legislative and Policy Updates
- Patient Group Learning and Engagement Opportunities
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February is Ectodermal Dysplasias Awareness Month
- Skin in the News
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CSD 2025 Hill Day - Registration is NOW OPEN!
Registration for the CSD 2025 Hill Day is now open! As a reminder, this event will be held from Sunday, May 18 to Tuesday, May 20, 2025. We're excited to head to Washington, D.C. to advocate on behalf of the 84 million Americans with a skin disease. In addition to meeting with legislators to discuss the CSD's legislative and policy priorities, we'll have prominent speakers and advocacy training.
In an effort to share the excitement, spread the word to your organization's members, and steer advocates to registration, the CSD has created an easy to use "Save the Date Toolkit." The toolkit includes information about the event, the link to register, and draft language you can utilize for your organization's newsletter and social media, including an image for use on social media platforms.
Click here to register, and please don't hesitate to reach out with any questions.
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Personal Story Submissions for
CSD's 2025 Hill Day
In preparation for the CSD Hill Day 2025, we ask you to identify a patient advocate within your organization who is willing to share their personal story. This patient advocate will be asked to provide a written one-page document about how their skin disease impacts them and how certain legislation can lessen the burden of their disease. If you happen to be a patient yourself, please consider sharing your personal story!
These one-page documents will be featured on the CSD website to serve as a reference for other advocates to draft their stories and will used by participants of the CSD Hill Day during meetings with legislators and staff. To learn more, see examples, and find out how to submit a story, please see here. All personal stories must be submitted here by March 15.
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CSD at the AAD Annual Meeting
The CSD is excited to host our annual Development Day in conjunction with the American Academy of Dermatology's Annual Meeting in Orlando, Florida. Our full Membership is invited to this event taking place on Saturday, March 8th, from 8:30 AM - 1:00 PM, in Ballroom N at the Hyatt Regency Orlando.
This event will be a time for our hard working Members to be poured into with great content from our keynote speakers and opportunities to connect with colleagues old and new. The Development Day will include catered breakfast and lunch. Our Annual Meeting will be rolled into the morning segment and will highlight the amazing work we have done together this past year while providing a look into the future.
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CSD & GlobalSkin Invitation to the Skin Matters Reception
The CSD and the International Alliance of Dermatology Patient Organizations (GlobalSkin) cordially invite you to the Skin Matters Reception! This casual reception will focus on the work our two organizations are undertaking to elevate the understanding and prioritization of skin diseases.
Date: Friday, March 7, 2025
Time: 6:30 - 8:30 PM
Location: Hyatt Regency Orlando Hotel
Please RSVP by March 1.
We hope to see you there!
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Complimentary Tabletop Exhibit for CSD Members at the Society for Investigative Dermatology 2025 Annual Meeting
The Society for Investigative Dermatology (SID) is excited to welcome CSD Members to San Diego, CA, for the 2025 Annual Meeting, taking place at the Hilton San Diego Bayfront Hotel from May 7-10, 2025!
The SID is pleased to extend a cordial invitation to members of the Coalition of Skin Diseases (CSD) to register for a Complimentary Tabletop Exhibit at the 2025 SID Annual Meeting.
The Tabletop Exhibit Registration Form must be submitted to the SID office by Monday, April 7, 2025.
For more information about your complimentary registration, please see here.
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CSD Supports Coalition Letters - Welcome Letter & NIEHS Funding
As part of the Ad Hoc Group for Medical Research, the CSD signed onto a welcome letter to Congress encouraging Members of Congress to utilize the Ad Hoc Group as a resource and highlighting its support of the NIH.
The CSD also signed onto a letter as part of the Friends of the National Institute of Environmental Health Sciences (NIEHS) coalition. This letter asks Congress to prioritize funding for the National Institutes of Health (NIH), the NIEHS, and the Superfund Research Program (SRP) in the next funding package. As a reminder, Congress passed a short-term continuing resolution (CR) late last year that funds the government through March 14, 2025. The CSD will continue to advocate for increased funding for these programs in the new 119th Congress.
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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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Camp Discovery for Kids 2025 - Virtual Info Sessions
Camp Discovery offers children living with a chronic skin condition a one-of-a-kind camp experience!
Provided at no cost to the families, Camp Discovery is one week of fun for kids with chronic skin conditions from across the United States and around the world to experience an adventure filled with fun, friendship, and personal growth.
Learn more by attending one of their virtual information sessions:
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Date: Tuesday, February 18, 2025
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Time: 4:00PM PT / 7:00PM ET
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Date: Thursday, February 20, 2025
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Time: 5:00PM PT / 8:00PM ET
Register for either of the information sessions HERE!
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The Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) Research Grant Program Accepting Letters of Intent
The Foundation for Ichthyosis & Related Skin Types (FIRST) is now accepting letters of intent (LOI) for the 2025 Research Grant Program. Projects with a promising LOI will be asked to complete a full application (5 page narrative). Pilot awards are available for up to $15,000 for one year. Research grants will be awarded for up to $50,000 for year one, with potential for a second year of funding with evidence of adequate progress and available funds. Priority will be given to applications that can be substantially advanced with the funding provided. Different types of ichthyosis research will be considered.
Letters of Intent (LOIs) are due by Friday, April 18, 2025. Please see here for more information!
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FDA-NIH Rare Disease Day
The FDA and NIH is hosting a Rare Disease Day event on February 27 and 28. This free event aims to provide the rare disease community—patients, caregivers, families, patient advocate groups, researchers, clinicians, health care providers, and trainees/students—with information relevant to their lived experiences, including activities by FDA and NIH that promote research and product development for this underserved population. This year’s event will feature panel discussions, rare diseases stories, in-person exhibits and scientific posters, and an art exhibition.
Date: Thursday, February 27 and Friday, February 28, 2025
Time: 10AM - 4PM ET
Location: in-person and virtual
Register: here
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FDA's Rare Disease Innovation Hub Releases 2025 Strategic Agenda
The FDA’s Rare Disease Innovation Hub (the Hub) recently released its Strategic Agenda, which outlines the actions the Hub plans to undertake during its first year with extensive involvement from the rare disease community, while also addressing questions about the ultimate structure and programs of the Hub. The Strategic Agenda reflects extensive input from and partnership with the larger rare disease community.
The FDA created the Rare Disease Innovation Hub (Hub) to serve as a point of collaboration and connectivity between the Center for Biologics Evaluation and Research (CBER) and the Center for Drug Evaluation and Research (CDER) with the goal of improving outcomes for rare disease patients. You can read the Strategic Agenda here.
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February is Ectodermal Dysplasias Month
According to the National Foundation for Ectodermal Dysplasias (NFED), "Ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia."
During Ectodermal Dysplasias Awarenss Month, please take a moment to visit the NFED's website to learn more about the disease, access resources, and find ways to support the ectodermal dysplasias community this month and throughout the year!
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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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