XP Family Support Group

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United States
Elk Grove, CA
XP Family Support Group

🌟 Our mission: Enhancing the quality of life for those affected by Xeroderma Pigmentosum (XP) through education, support services, and research.

Join us in raising awareness and driving advancements towards a cure. Together, we can make a difference! Xeroderma Pigmentosum (XP) is a genetic disorder whereby a person's DNA lacks the ability to repair itself when damaged by ultraviolet light (UV) or other mutagens. Of its many complex functions, DNA repair is predominantly used by skin cells to repair sun damage. When DNA is damaged and left

unrepaired, mutations in the genetic code are replicated after cell division. As a result, newly formed cells are mutated at creation and do not function as they should. The damage that is left unrepaired in XP cells is irreversible. Some of these mutations occur in parts of the gene that are responsible for regulating cell growth; the p53 gene for example keeps cells from becoming cancerous. In XP, the outcome of UV exposure coupled with insufficient DNA repair results in preamature aging and skin cancer in early childhood, even as young as one year old. Some people have a severe sunburn reaction even after a few minutes of indirect sunlight due to the immediate death of skin cells upon exposure to UV. With protection, these skin symptoms can be prevented. Therefore, protecting people with XP from UV is paramount to their health and safety. Protection is a balance of health risks vs. quality of life. Life with XP is a daily process of weighing risks, controlling environments, measuring protection, and staying informed on research.

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! 💙

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! 💙

Address

Elk Grove, CA

Website

http://xpfamilysupport.org/

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