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Which self-care ideas are you going to try this month?

We're proud to support the #IAmNumber17 campaign & advocate for the rare disease community 💛🎥Watch the #FridgeDiaries film and learn more about the hidden reality of living with a #RareDisease. Help us raise awareness and share the Fridge Diaries film: iamnumber17.org.uk/fridge-diaries/

#IAmNumber17 #RareDisease #LivingWithARareCondition

Some latest research from the Centre for Appearance Research Appearance Research on exploring the social media experiences of adults with visual differences

Behind every statistic is a person, a family, a story. Let's raise awareness for the challenges faced by the rare disease community. Visit the I am number 17 website to learn more: I Am Number Seventeen - Fridge Diaries #IAmNumber17 #RareDisease

Have a great weekend everyone, whatever you do I hope it’s filled with fun & laughter & good times 🥰

Mandy Sellars Gillian Taylor (Geen) Choi ♥️ ⋆˙⟡♡ simone lahbib ღ ✮Carley✮ ღ💫 Zoe Sandy Childs Kel kat Hilde Belien 🇧🇪 Carmel Larkin Helen Ingrid Alison Langley Mand C BGR_VIPs Paulap77 Paula London 🇬🇧 Good morning here's to a fab day 🥰#Monday❤

It’s time to #ChangeTheRareFuture so that people with rare diseases receive faster diagnoses and better access to treatments, and innovators find a coordinated, sector-wide approach! We support the recommendations from LifeARC, Genetic Alliance UK: t.ly/Ka7qn

Exploring the social media-related experiences of adults with visible differences using photo-elicitation interviews from Appearance Research full article here: dl-mail.ymail.com/ws/download/ma…

We signed the #IAmNumber17 open letter to the government, calling for greater awareness and support to ensure people with rare diseases receive the care and understanding they deserve and need. Together, we can make a difference. Read the full letter here:iamnumber17.org.uk

Article looking at pharma companies that are developing treatment for Vascular Malformations: barchart.com/story/news/331…

People with a long-term physical condition are almost 3 times as likely to have a common mental health condition. This doesn’t mean that poor mental health is inevitable. Find out more: bit.ly/40KuU4y

Distinct pik3ca mutations define pediatric overgrowth syndromes: mdnewsline.com/distinct-pik3c…

pubmed.ncbi.nlm.nih.gov/40595500/

mdnewsline.com/alpelisib-mono…

Please join us in supporting 1 of our younger members, Amelia who lives with PROS, whilst she takes on a big challenge: “I'm raising £500 to support two amazing charities; Gopi3ks and Great Ormond Street Hospital by completing a 5000m swimathon.” justgiving.com/crowdfunding/a…

mdnewsline.com/alpelisib-demo…

For those in the U.K. with children who are on summer break, hopefully this may help 👇🏻

New research paper from 25/7/25 ojrd.biomedcentral.com/articles/10.11…

Augusts calendar brought to you by Action for Happiness