Action for XP

🌟 Help Us Win £1,000 for the XP Community! 🌟 Nominate us in the Benefact Group’s #MovementForGood campaign to help fund vital resources for those with XP. 👉 Click: bit.ly/3QaejBP 👉 Fill in your details 👉 Hit submit! 🎉 Please share & tag friends! #ActionForXP

Our Virtual Cuppa events are taking a break until February, returning with a new name chosen by you: #XPTogether! 🎉 Expect inspiring guest speakers, engaging topics, and meaningful connections. 💙 See you in February – bigger & better than ever! #ActionForXP #Support

Unfortunately, Clinuvel has temporarily suspended XP therapy development to focus on other areas. We're meeting with them this week and hope to share more soon. Read their full press release here: bit.ly/3APxBrT #ThisisXP #XPCommunity #RareDisease

🌍Today is International Day of Tolerance! 🌍 At Action for XP, tolerance means everyone feels safe and valued. Let’s embrace kindness and inclusivity for a brighter future. 💙 #ActionForXP #InternationalDayofTolerance

📢 Help Us Choose Our New Virtual Cuppa Name! ☕️ We're rebranding our virtual cuppa event, and we’d love your input! Cast your vote in the poll and help us shape the future of our event series! #ActionForXP #CommunityPoll #XPFamily #VirtualEvent

Don't forget! Our Virtual Cuppa ☕ is happening on 30th October at 7pm GMT. Join us to meet the new team, share your thoughts, and help shape the future of Action for XP. See you there!👋 #ActionForXP #VirtualCuppa #MeetTheTeam #XPCommunity #ShapingTheFutureTogether

Join us for our next Virtual Cuppa ☕️ 📅 Date & Time: Wednesday 30th October at 7PM GMT 💻 Where: Zoom - Link to Follow Meet the new team, share your ideas, and help shape the future of Action for XP in 2025. #ActionForXP #VirtualCuppa #MeetTheTeam #XPCommunity #ShapeTheFuture

At Action for XP we want to support you and our community in the best way we can, but to do so we need YOUR feedback into what you'd like to see from us! Click the link and complete our feedback form to have your say in how we move forward. forms.gle/j6CrE37BBSdzAs…

We are pleased to be sharing some fantastic news today! The Evelina London Children’s Hospital, adjacent to St Thomas’ Hospital at Westminster Bridge, has been chosen for the new Children’s Cancer Centre for London and the South East! england.nhs.uk/london/2024/03…

We are celebrating International Women’s Day 2024! Here are just a few of the passionate women involved in supporting XP patients and their families, we know you could mention many more! Tag your inspirational women and give them a shout out this International Women’s Day!

If you would like more information on this award, please contact Susan Maguire email: susan.maguire@bdng.org.uk or telephone 07709550132.

The BDNG are hosting an award event in April in London. One of the categories is The Patient Choice Award. If you would like to nominate a dermatology nurse for exceptional care and treatment, please visit bdng.org.uk/the-patients-c… The closing date is 23 February 2024.

Reminder to complete our survey so we can plan a programme of events to meet the needs of our whole community. We would greatly appreciate if you could take 5mins to let us know what kind of events you would like to see in 2024 and beyond 😁 bit.ly/3rYpKUj

After South First highlighted the plight of XP-affected children the Karnataka Health Department interacted with Savitha and recorded details of her condition. The visit has provided a ray of hope to her and others with XP. 📰 Full article: bit.ly/44XOeeL

Part 2 📰 The report now takes a look at how the local authorities remain blind to XP, which they refer to as "chukki kayle" - translating to "the diease of dots". Read the full article here: bit.ly/45imly0

Article alert 📰 This is the 1st of a 3-part investigative report on XP in Karnataka, conducted by South First. Click the link to read about Savitha, a 13-year old in Kuratti Hosuru village and Deeksha, a 15-month old baby in Bhadrenahalli village. bit.ly/3Qn1LrY

Hope everyone has been settling back into school this month 👩‍🏫 What have you been packing in your school bag to help keep you UV protected? 🎒 Comment below ⬇️

Today is National Columnist Day! Our Chair, Richard Barlow, writes a regular column for @RARERevolutionMagazine about his experiences of being a dermatologist & an XP patient. Read here: rarerevolutionmagazine.com/category/rare-…

Here's to our wonderful brothers & sisters who are part of families living with XP! ❤️ The report from a study gaining personal insights of siblings with rare disease in their familiy is available here: bit.ly/3TtOmhd. Here are some quotes from the report:

Today, World Health Day, marks the anniversary of the founding of WHO in 1948 🌍 This year is the WHO's 75th anniversary, and the theme is "Health for All" - watch the short video here: who.int/campaigns/75-y…