XP Family Support Group

04/09/2026

📣 Our April XP Newsletter is out!

If you didn’t see it in your inbox, be sure to check your spam or junk folder—sometimes it ends up there.

You can also view it here:
https://mailchi.mp/108049138f06/april-2026-newsletter

As always, thank you for being part of our community 💛

A newsletter from the Xeroderma Pigmentosum Family Support Group, a registered non-profit organization dedicated to helping those touched by the rare genetic condition through education, research and kindness.

03/17/2026

As we mourn the closing of Action for XP, we want to take a moment to honor and share something truly special they helped bring to life 💛

XP & Me is a teen comic created to give young people living with XP a voice—helping them better understand their condition, feel seen and represented, and most importantly, know they are not alone.

This resource is meaningful, empowering, and completely free for our community to access.

📖 Read it here: https://bit.ly/XpAndMe

We are so grateful for the impact Action for XP has had on the XP community, and we hope this comic continues to support and inspire our teens for years to come.

Little Ted - XP & ME

03/15/2026

💡 Help Us Plan the XP Conference!

As we work on the schedule for the conference, we want to hear from you!

What topics would you like covered?

Examples might include:
• Research updates
• Skin care & prevention
• Neurological symptoms
• Daily living tips
• School support
• Adult XP care

Drop your ideas in the comments below 👇 so we can try to focus on what matters most to our community.

Your input helps shape the conference! 💙

03/13/2026

✨ XP Conference Registration is NOW OPEN! ✨

We are excited to announce that registration for the upcoming XP Family Conference is officially open! We can’t wait to bring our community together for education, connection, and support.

Registration Information:
• $250 per person
• XP patients attend FREE
• Children ages 3 and under are FREE

There is a $100 NON-REFUNDABLE family registration fee.

⚠️ Important: When registering, please make sure to add 1 "Conference Non-Refundable Fee" for the $100 family fee.

If the fee is not added to your cart, the system will count your payment as a donation rather than conference registration, and you WILL NOT be registered for the conference.

We strongly encourage families to register early so we can plan an amazing event for everyone.

👉 Register here: https://www.xpfamilysupport.org/event-details/2026-xp-family-support-group-medical-conference

We are so excited to see our XP community together again! 💙

03/12/2026

🎉 Exciting News! 🎉

We’re thrilled to announce that our 2026 Conference will be held at the Mall of America in Minneapolis, MN from November 6–8, 2026! 🏨✨

Get ready for an incredible weekend of connection, learning, and fun at one of the most iconic destinations in the country.

🗓 Mark your calendars now!
📝 Registration will be opening soon.

Be sure to follow along for updates on when and where to register—we can’t wait to share more details with you!

01/06/2026

No one has messaged with interest in this opportunity. We would love to send a family to this camp. Please message us!

01/04/2026

💛 Opportunity for ONE Family – Camp Dermadillo Family Camp (Texas) 💛

The XP Family Support Group has the opportunity to nominate ONE family to attend Camp Dermadillo Family Camp in Burton, TX from February 13–16, 2026 (President’s Day weekend).

This experience is for a family with an affected school-aged child (ages 7–14). The selected family will enjoy a weekend of connection, fun, and community, and will also participate in sharing their story through photos and video as part of a meaningful traveling exhibition.

✨ What’s covered:
✔️ All meals
✔️ Lodging
✔️ Activities
✔️ Fully accessible, barrier-free camp

🚗 What’s not covered:
• Travel to/from camp

📅 Important commitment:
Families must be able to attend ALL sessions, starting Friday, February 13 at 6:00 PM and ending Monday, February 16 at 9:00 AM.

👉 How to apply:
Please DIRECTLY MESSAGE the XP Family Support Group if your family is interested.

⚠️ Only ONE family can be nominated.
If more than one family reaches out, the family will be selected by random draw.

⏰ Deadline to message us: Wednesday, January 7

If this opportunity feels like a good fit for your family, please don’t hesitate to reach out 💛
Feel free to share this post with families who may be in

01/02/2026

Happy New Year from the XPFSG! 💙💛Exciting news to be shared soon!

12/25/2025

✨ Happy Holidays from the XP Family Support Group ✨

As we move through the holiday season, we want to send love, light, and strength to every XP family in our community—no matter how or what you celebrate.

We are grateful for this community and the support, knowledge, and connection shared here every day. Thank you for showing up for one another and for being part of the XP family.

Wishing you peace, comfort, and brighter days ahead. 💙

With love,
XP Family Support Group

12/02/2025

If we could get some more patients and families to fill this out, that would be wonderful!! Thank you!

🧴☀️ Do You Use UV Protective Window Film?
Researchers at University Hospitals Department of Dermatology want to hear from YOU!

They’re conducting a brief 5-minute survey to better understand the awareness and use of UV protective film among individuals with photosensitive conditions (like XP) and those with occupational sun exposure.

✅ You qualify if you’re between 18–89 years old (Parents please fill out for children under the age of 18)
🕐 Takes just 5 minutes
🔗 https://redcap.uhhospitals.org/redcap/surveys/?s=DDD47MCLD3XWDEKF&group=3

Your participation can help improve sun safety awareness and future research!

If you have questions, contact Claire Reynolds at [email protected] or 603-809-3999.

Please share with friends, family, and community members who might qualify!

12/02/2025

Today is Giving Tuesday, and we’re asking our community to join us in supporting XP families across the US

Your generosity allows the XP Family Support Group to continue offering resources, events, and life-changing programs for families living with Xeroderma Pigmentosum.

💛 Your Giving Tuesday donation helps us:
• Provide safe, UV-protected gatherings and connections
• Support newly diagnosed families with guidance and resources
• Host our upcoming 2026 XP Medical Conference & Kids Camp
• Continue advocacy and awareness efforts for this rare disease

Every dollar truly helps a family.
Donate today and be a light for someone living with XP. 🌞✨
www.xpfamilysupport.org