Action for XP

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Action for XP

Action for XP

@ActionforXP

Follow @ ActionforXP; improving lives of patients and families affected by the rare and incurable condition Xeroderma Pigmentosum (XP).

Katılım Ekim 2012
255 Takip Edilen406 Takipçiler
Action for XP
Action for XP@ActionforXP·
🌟 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
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Action for XP
Action for XP@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
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Action for XP
Action for XP@ActionforXP·
🌍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
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Action for XP
Action for XP@ActionforXP·
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…
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Action for XP
Action for XP@ActionforXP·
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…
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Action for XP
Action for XP@ActionforXP·
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!
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Action for XP
Action for XP@ActionforXP·
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.
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Action for XP
Action for XP@ActionforXP·
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
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Action for XP
Action for XP@ActionforXP·
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
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Action for XP
Action for XP@ActionforXP·
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
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Action for XP
Action for XP@ActionforXP·
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
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Action for XP
Action for XP@ActionforXP·
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 ⬇️
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Action for XP
Action for XP@ActionforXP·
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:
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Action for XP
Action for XP@ActionforXP·
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…
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