XP Family Support Group

09/03/2026

We are so excited to announce that XPFSG will be attending the annual Pediatric Dermatology Research Alliance - PeDRA Conference with the CSD.

This will be our first time attending, and we can’t wait to connect with researchers, healthcare professionals, advocates, and other organizations while helping spread awareness about XP.

We are grateful for the opportunity to make new connections, learn, collaborate, and continue raising awareness for the XP community! ☀️💙

09/01/2026

Reminder!! 2026 Medical Conference and Kids Camp CLOSES TODAY!! We hope to see you there!!

08/30/2026

ONE more day till conference registration closes (SEP 1)!! Can't wait to see everyone in November!

08/19/2026

Conference Registration CLOSES SEPETEMBER 1. Please register ASAP.

💙 Registration for the 2026 XP Family Support Group Medical Conference is OPEN—but don’t wait! 💙
Join us November 5–8, 2026, at the Radisson Blu Mall of America in Bloomington, Minnesota, for a weekend of learning, connection, and community.
Whether you’re newly diagnosed or have been part of the XP community for years, this conference is a unique opportunity to:
✨ Hear from leading XP researchers and medical experts
🤝 Connect with other XP families from around the world
💙 Share experiences, ask questions, and build lifelong friendships
🎉 Create meaningful memories with people who truly understand your journey
⏰ Registration closes September 1! Don’t miss your chance to be part of this incredible weekend.
📝 Register today: https://www.xpfamilysupport.org/event-details/2026-xp-family-support-group-medical-conference
We can’t wait to see everyone in Minnesota this November! 💙 Please like, share, and tag another XP family who should join us

Mark Your Calendars and Get Ready to reconnect! Our 2026 Conference is heading to the Radisson Blu, Mall of America in Bloomington, MN. Register TODAY to reserve your spot!!

08/11/2026

We are excited to announce that Dawson's 3rd Golf Tournament for XP Awareness is a sold out event with a full field of golfers!!

There are still a few sponsorships available along with hole signs for $200. We are accepting promotional products (120 needed of each), for the goodie bags. Additionally, we are still soliciting gift certificates or merchandise items for the raffle and silent auction.

If you're interested in supporting Dawson's 3rd Golf Tournament for XP Awareness, please contact Hal at [email protected]

We are always accepting donations via the website at https://xpfamilysupport.org. (Donate Now button)

07/30/2026

🎟️ XP Family Support Group Annual Raffle! 🎟️

Get your tickets for a chance to win some amazing prizes, including:

✨ AI Smart Glasses
✨ NEX Playground System
✨ Red Light Therapy Mask
✨ Minky Couture Blanket
✨ iPad
✨ $100 Amazon Gift Card
✨ Smart Ring

Tickets are $5 each or 5 tickets for $20!

The winning tickets will be drawn on November 8th at the XP Medical Conference. You do not want to miss your chance to win while supporting the XP Family Support Group!

Message us to purchase your tickets Please share this post with your family and friends! 💙💛

07/18/2026

💙 Registration for the 2026 XP Family Support Group Medical Conference is OPEN—but don’t wait! 💙

Join us November 5–8, 2026, at the Radisson Blu Mall of America in Bloomington, Minnesota, for a weekend of learning, connection, and community.

Whether you’re newly diagnosed or have been part of the XP community for years, this conference is a unique opportunity to:
✨ Hear from leading XP researchers and medical experts
🤝 Connect with other XP families from around the world
💙 Share experiences, ask questions, and build lifelong friendships
🎉 Create meaningful memories with people who truly understand your journey

⏰ Registration closes September 1! Don’t miss your chance to be part of this incredible weekend.

📝 Register today: https://xpfamilysupport.org

We can’t wait to see everyone in Minnesota this November! 💙 Please like, share, and tag another XP family who should join us.

For 20+ years, XP Family Support Group has focused on empowering and connecting XP patients, caregivers, and communities. Helping to foster understanding, resilience, and hope in navigating the challenges associated with this rare genetic condition. Together, we aim to promote awareness, advocate fo...

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! 💙