Join #CamRARE in Cambridge (27 Feb) for #RareDiseaseDay
Through powerful lived-experience stories & a multidisciplinary panel, we’ll explore what it means to live with a rare condition & how systems can better respond throughout a lifetime.
Tickets: camrarerarediseaseday2026.eventbrite.co.uk

Catch up on the latest CamRARE news and hear about our plans for #RareDiseaseDay2026
mailchi.mp/camraredisea...

Earlier in November, the OHC team joined the programme and conversations at the CamRare Summit 2025, exploring how scientific advances, policy shifts and new models of collaboration could shape the next decade of rare disease research and care.

Photos: Jeremy Peters
#RAREsummit25

As our Managing Director and founding member prepares for her planned retirement, CamRARE is seeking a dynamic and visionary new leader to guide the charity into its next decade.
Find out more about this exciting opportunity by following this link:
www.charityjob.co.uk/jobs/cambrid...

Yesterday, we heard from Professor Carlo Rinaldi, Neurological Disorders Theme Lead at the Oxford-Harrington Rare Disease Centre, who spoke at the Cambridge Rare Disease Network (CamRARE) Rare Summit 2025 about the next decade of rare disease innovation.

Join CamRARE for their #RAREsummit25 on 6 Nov as they mark 10 years of progress.
The summit will host a diverse lineup of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
www.camraredisease.org/raresummit25/

✨ Happy International Day of Charity!

2025 = CHC/GOSH Development Project, CHC/CamRARE Neurology project.
Parliament Advocacy & Rare Disease for Schools framework.

Patient booklets, Awareness day
Family conference
YouTube channel HypoHugs podcasts

Find us:
linktr.ee/chcharityuk
#CharityDay

We have several ways for children and adults with #Hyperinsulinism, to keep safe and alert others when #Hypoglycaemia can leave them vulnerable.

🧑‍⚕️Medic Alert
🌻Sunflower lanyards
🚨Alert Cards
📑CamRARE patient Passport

Find out more:https://hyperinsulinism.co.uk/alert-cards-and-lanyards/

Bethan is a sibling carer to someone with a rare disease & a CamRARE community member.

She's used her experiences to be a Young Carers Advisory Board member with Centre 33 & leads the Young Carers group at school. Young carers need a break, time to deflate, your time to check-in.

Recently Bethan has worked with CamRARE siblings through a workshop in collaboration with Centre 33.

For #RareDiseaseDay, Bethan says:

“Remember siblings.
Young carers are like balloons. They inflate with all that’s going on with their sibling, but if the pressure gets too high - they pop.”

At CamRARE’s Companies Forum, we unite:
🔹 Biopharma
🔹 Healthcare & research
🔹 Patient groups
Last meeting, we introduced the Rare Disease Research Network—co-created with patients to connect with experts to drive projects forward.
Want to get involved? Let’s talk!
#RareDiseaseDay #RareDisease

#Hyperinsulinism families, planning to travel?

🌞Travelling with Hyperinsulinism tips, advice & resources
hyperinsulinism.co.uk/support-for-...
🌻Sunflower Lanyards 💓CamRARE patient passports
hyperinsulinism.co.uk/alert-cards-...

Proud to be part of the CamRare Rare Disease Research Network and the Resources Development Team. Read their blog to find out more:

www.linkedin.com/posts/raredi...

Ooooh CamRare I am impressed thank you!

Excited to share my latest blog post on my collaboration with Dr. Katie Coveney, LifeArc, and CamRARE! We created a puzzle book and board game to raise awareness about Noonan Syndrome and other rare conditions. Read more here: www.lelesaa.com/news/art-mee...