Next week is World Mental Health Awareness Week, to raise awareness we are having a Volunteer day at Benfieldside Community Garden , Thursday 16th May 12.30-4.00pm. All we ask is you wear a green item. Please scan the QR code to sign up! All welcome. Mental Health Foundation #wearitgreen

Lack of awareness increases the burden on patients to equip themselves with knowledge of their condition and become their own advocates and activists.
Help us #ElevateCareForRare #IAmNumber17 iamnumber17.org.uk

Alpelisib for treatment of patients with PIK3CA-related overgrowth spectrum (PROS) sciencedirect.com/science/articl…

Day 5 of Vasculitis Awareness Month 💚💙
A story today about a woman named Jill & her symptoms, how she got diagnosed & what life is like for her now
You can read her story at vasculitis.org.uk/living-with-va…
Thanks everyone who takes the time to read & share ❤️
Vasculitis UK - In memory of John Mills MBE 💙💚

This looks to be a good event 👍
#Colaboration
#Networking
#Community
#StrongerTogether

😅 Phew, we have checked in with our friends at Mental Health Foundation and #MentalHealthAwarenessWeek (13-19 May) is still on.

Check out the latest research in to PROS brought to you by the CLOVES Syndrome Community featuring Ralitsa Madsen Robert Semple Oliwia Mruk & other researchers: youtu.be/xVduKLkp6P4?si… #PROS #ZebraFish #PROS Research

Meaningful May - Day 7: Make a list of what matters most to you and why actionforhappiness.org/meaningful-may #MeaningfulMay

Thank you JJ 🥰🥰

Feeling overwhelmed by the challenges of a genetic condition? Our helpline offers a compassionate ear and practical guidance to help you navigate this journey with confidence and resilience. You don't have to face it alone.

Lack of awareness increases the burden on patients to equip themselves with knowledge of their condition and become their own advocates and activists.
Help us #ElevateCareForRare #IAmNumber17 Alström Syndrome UK Gene People HAE UK Haemophilia Society

People living with #RareDisease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers.

Help us #ElevateCareForRare #IAmNumber17

Check out

iamnumber17.org.uk

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Recurrent Cellulitis as Clinical Presentation of Klippel–Trénaunay Syndrome: A Case Report: acpjournals.org/doi/10.7326/ai…

People living with #RareDisease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers.

Help us #ElevateCareForRare #IAmNumber17

Check out

iamnumber17.org.uk

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Marie James 🏴󠁧󠁢󠁷󠁬󠁳󠁿

How many rare diseases are there?
Article via Healx

'it is safe to conclude that there are more than 10,000 rare diseases'

healx.ai/blog/how-many-…

#RareDisease #Health

Would you choose medication that is most effective at reducing pain or choose one with fewer overall side effects?

Help researchers understand your perspective on the most important outcomes from a treatment. Learn about the study and take the survey 👉 ow.ly/KYhb50RhWFA

People living with rare disease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers.
Help us #ElevateCareForRare #IAmNumber17 PINNT Rare Disease UK @sicklecelluk Ehlers-Danlos Support UK

It’s the start of another month #MeaningfulMay from Action for Happiness today’s quote is “do something kind for someone you care about”

Ohio University seeks participants for a study on #VascularAnomalies & family planning. If you’ve navigated pregnancy or fertility decisions impacted by a vascular anomaly, your story can make a difference.
Interviews via Zoom/phone.

➡️Go to bit.ly/3Rkq9dR for details.

I AM NUMBER SEVENTEEN

People living with rare disease must often manage their own care. The burden of care coordination can create
pressures across the lives of patients, their families and carers. Help us #ElevateCareForRare
#IAmNumber17