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CamRARE (Cambridge Rare Disease Network)

@camrare.bsky.social

Building cross sector networks to help create a world where everyone affected by a rare condition feels connected, empowered, and supported. #RareDisease #RareConditions Local | National | Global www.camraredisease.org

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CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 9mo ago

If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals! camrarerarediseaseday2026.eventbrite.co.uk

Living Rare: Reflections Across a Lifetime

Join CamRARE on 27 February 2026 to mark International Rare Disease Day for ‘Living Rare: reflections across a lifetime

camrarerarediseaseday2026.eventbrite.co.uk

Rare Disease Day Official@rarediseaseday.bsky.social · 9mo ago

🌍 What’s happening for #RareDiseaseDay near you? Fun runs, conferences & more, our community is celebrating across the world! 👉 It’s not too late to add your event to the map or find one nearby: https://go.rarediseaseday.org/find #RareDiseaseCommunity #GetInvolved

“What’s Occurring... Near You!” A blue and purple gradient background with a world map and several colourful location pins placed across different continents.
CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 9mo ago

Delighted to share the talk by Lucy McKay @medicsforrare.bsky.social from #RAREsummit25, on rare disease, human rights & global equity. Lucy shares insights from her work with the Lancet Commission on Human Rights and Rare Disease, on point with the #RareDiseaseDay of equity: youtu.be/jGPwbNzY0zY

RAREsummit25 - Exploring rare diseases through the lens of human rights

YouTube video by Cambridge Rare Disease Network (CamRARE)

youtu.be

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 9mo ago

We’re excited to share 'Rare Perspectives' - an insightful discussion at #RAREsummit25, where our panelists came together to discuss the realities of both living (and working) rare. Some members of our audience share their ‘top 5 rare priorities’. What are yours? youtu.be/jzq7wDS4kFQ #RareDiseaseDay

RAREsummit25 - Rare Perspectives - Career, Family and Rare Disease Advocacy

YouTube video by Cambridge Rare Disease Network (CamRARE)

youtu.be

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 9mo ago

Mental and physical wellbeing are intrinsically linked, therefore #MentalHealth needs to be central to the conversations have this #RareDiseaseDay Insights from #RAREsummit25 panellists Kelly, Max & Tom @tomstaniford.bsky.social www.camraredisease.org/mental-wellb...

Navigating Mental Wellbeing at RAREsummit25

Insights from the RAREsummit25 panel and workshop exploring the need for improved support for mental health for people with rare conditions.

camraredisease.org

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 10mo ago

How can digital tech drive better evidence, fairer treatment access & a more empathetic experience for people with #RareDisease? This hot topic, coinciding with the MHRA’s Nov 2025 position paper, was discussed at CamRARE’s Companies Forum. Read more: www.camraredisease.org/digital-tech...

Discussing digital tech and patient data at Companies Forum

Experts, patients and policymakers come together at Companies Forum to explore how digital tech can be harnessed to aid patient data collection.

camraredisease.org

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · 12mo ago

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...

Manging Director | Cambridge Rare Disease Network | CharityJob

Apply now for Manging Director. , £54,000 per year, find a career with meaning today

charityjob.co.uk

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · last yr.

Ending the #DiagnosticOdyssey requires more than genome sequencing. It needs equity, trust, data & policy change. Read the key insights from our Companies Forum ➡️ www.camraredisease.org/diagnostic-o... @genomicsengland.bsky.social @sicklecelluk.bsky.social @lifearc.bsky.social @rairda.bsky.social

Discover key takeaways from Jul 2025 Companies Forum

Experts, patients and policymakers come together at Companies Forum to explore how genomics, AI and policy can shorten the diagnostic odyssey in rare disease.

camraredisease.org

CamRARE (Cambridge Rare Disease Network)@camrare.bsky.social · last yr.

Did you catch the latest about #RAREsummit25? - the programme is shaping up! RAREsummit alumni, patients pitching research ideas, interactive workshops, networking dinner and more... Read more here & grab your tickets before they're all snapped up! www.camraredisease.org/raresummit25...

Catch a glimpse of the much anticipated RAREsummit25 programme.

Celebrating 10 years of progress and impact in rare diseases, the UK’s leading multi stakeholder RAREsummit returns to Cambridge

camraredisease.org