XPFamilySupportGroup

The XP Family Support Group is dedicated to improving the quality of life of those with xeroderma pigmentosum. Visit for more info!

[XPFamilySupportGroup @XPFamilySupport]

@MidnightSun_Mov (starring @bellathorne & @PSchwarzenegger, directed by @MrScottSpeer) is being released on digital next week - Now's a great time to share the XP fact sheet and raise awareness and support for patients and families! @XPFamilySupport #ThisisXP

[XPFamilySupportGroup @XPFamilySupport]

@ellen_hoadley trying to get ahold of you

[XPFamilySupportGroup @XPFamilySupport]

Another great board meeting! Thank you XP Board for all your hard work. #ThisisXP #XPFSG

[XPFamilySupportGroup @XPFamilySupport]

Did you know that acrylic fingernail application involves direct exposure to UV light ~ which can increase skin cancer in the fingers and under the fingernail? #themoreyouknow #besafe

[Woodyherrera @Woodyherrera1]

2018.11.09 Hat Making for Delizah 2018 XPFSP Conference Wichita KS #xerodermapigmentosum #thisisxp @xpfamilysupport @ Drury Plaza Hotel Broadview Wichita https://t.co/R3Q2dPG77Z

[Tennor @JTennor]

This week I'm at a conference to learn about my daughter's rare condition called xeroderma pigmentosum. It's great to learn together as a community. #ThisisXP

[XPFamilySupportGroup @XPFamilySupport]

Great first day at the XP National Medical Conference! We learned about cool advances in XP research, young adult advocacy and life after high school, and an amazing vision for inclusion through Positive Exposure Foundation. Can't wait for tomorrow!

[XPFamilySupportGroup @XPFamilySupport]

We are looking forward to seeing all of our XP friends in Wichita this weekend for the XP Family Support Group National Medical and Family Conference - including Firefly Kid's Camp and #XPYA Young Adult Meet-Up!

[XPFamilySupportGroup @XPFamilySupport]

Today is #WorldMentalHealthDay! Be kind to yourself! Take a walk, talk to a friend, do something creative, and breathe. Everybody needs help sometimes, and there is no shame in asking - repeatedly that's what it takes! - for support. You matter. Take care of you! #BreakTheStigma

[XPFamilySupportGroup @XPFamilySupport]

This is awesome, Peyton! Thanks for shining a light on XP! https://t.co/1BZF4fOH4H

[XPFamilySupportGroup @XPFamilySupport]

REMINDER! Registration for the XP National Medical Conference closes this Friday 10/5. Sponsorship opportunities are still available! Registration includes Firefly Kids' Camp, #XPYA Young Adult Meet-Up, and family fun activities with all your XP Friends! https://t.co/pgNlu7Dsze

[XPFamilySupportGroup @XPFamilySupport]

Only two weeks left to register for the National XP Family Medical Conference! Registration includes all workshops, meals, lodging, and entertainment, as well as Camp Firefly and XPYA Young Adult Meet-up. Deadline to register is 10/5! https://t.co/pgNlu7Dsze

[XPFamilySupportGroup @XPFamilySupport]

Fall is a great time for ALL kids to explore how the outdoors comes alive at night! Look what our friend Pax is discovering! #ThisisXP (https://t.co/KEff0beVsd)

[XPFamilySupportGroup @XPFamilySupport]

Registration for the National Medical Conference closes 10/5. Registration fee includes conference, meals, hotel, and activities including Firefly Kids Camp and XPYA Young Adult Meet-up for a family of 4. Register OR Sponsor the event at: https://t.co/pgNlu7Dsze

[XPFamilySupportGroup @XPFamilySupport]

We are so excited that young adults at the #XPFSG National Conference will be touring @WichitaState and will hear from their Disabled Student Services director, a university professor, and a student with XP about planning for and attending college with XP! #XPYA #ThisisXP

[XPFamilySupportGroup @XPFamilySupport]

The Children's Inn at NIH provides invaluable respite care to our families as they participate in medical research. Please read the following statement about a structural crisis at the Inn and consider making a donation at this critical time.

[The Children's Inn @TheChildrensInn]

To follow updates on this emergency, visit our website at https://t.co/NUYeLdHgMi.

[XPFamilySupportGroup @XPFamilySupport]

Register for the conference, or sponsor families, here: https://t.co/pgNlu7Dsze

[XPFamilySupportGroup @XPFamilySupport]

We are SO EXCITED! Rick Guidotti of https://t.co/mJbBKN4dFc will be presenting and taking photographs at the XP Family Support Group National Medical Conference in November! @PositiveExpo seeks to celebrate diversity through the arts, and Rick's work has been featured worldwide!

[XPFamilySupportGroup @XPFamilySupport]

How's your summer going? Are you staying sun-safe? #ThisisXP

[XPFamilySupportGroup @XPFamilySupport]

Research with brave XP rare disease patients have taught doctors much of what we know about the most common form of cancer - skin cancer. It's important for everyone to #CareAboutRare! Looking forward to learning more about #ThisIsNIH! #ThisisXP #CancerMoonshot

[NIH @NIH]

Did you know the National Institutes of Health is the largest biomedical research agency in the world? With an annual budget of $37.3B, and comprised of 27 Institutes and Centers, each with their own research agenda, we bet there’s a lot you don’t know about us. #ThisIsNIH #NIH

[XPFamilySupportGroup @XPFamilySupport]

Just the idea of intentionally exposing an infant to UV makes us cringe! Wear your sunscreen, friends! #TheMoreYouKnow