A platform for change
CamRARE’s RAREsummit21 is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.
On 7th October 2021, we will hold our 5th RAREsummit – a flagship CamRARE event gathering over 300 great minds in rare diseases to make connections, exchange ideas and openly debate possibilities.
More than an event
RAREsummit is more than an event – it’s where the magic happens. A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.
RAREsummit21 is virtual, accessible to all, a global experience and available to ticket holders for 30 days following.
Countdown to end of On Demand RAREsummit21
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CamRARE’s RAREsummit meeting was a fantastic opportunity for stakeholders across the spectrum to come together, share ideas and build on each other’s insights and experience. The day was remarkable for the spirit of collaboration and the willingness to work together was displayed by all.
Alastair Kent, rare disease policy & patient engagement expert
Interactive exhibition zone
Talks and panel discussions with audience participation
Poster and film gallery
Build your network through ours. Meet experts & each other
Specialist breakout workshops
Global audience. No travel. Accessible. Eco friendly
Interactive exhibition zone
Talks & panel discussions with Q&A
Poster & film gallery
Build your network through ours
Specialist breakout workshops
Global audience. No travel. Accessible
The aims of RAREsummit21
to raise awareness of rare conditions and their impact
to give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners
Why attend? Learn something new, be inspired, meet people, add value, collaborate
meet, mingle and hold crucial discussions with potential partners from local and global arenas
take away practical strategies and fresh ideas to embed into your own work
take part in interactive workshops and watch Dragon’s Den -style pitching sessions
hear from and put questions to key opinion leaders
I was really proud to represent haemophilia among 50 other rare and chronic conditions in the room! It’s events like this where I personally can identify with the true essence of advocacy and empowerment. As patient activists and leaders, we need to ensure key messages around optimising care and holistic support transcend from the conference to the community at a grassroots level.
RAREsummit speaker, Laurence Woollard, Haemophillia patient and advocate
There is something very powerful about those with rare disease (or affected by one) creating their own future. To me, this conference was a testament to the power and energy of patients and their families doing just that.
RAREsummit19 speaker, Cecily Morrison, Microsoft Research
A huge thank you to all of our RAREsummit21 sponsors and supporters. Your support enables us to challenge the status quo in rare diseases, showcase great work from around the world and ensure that costs are kept low for patients and patient groups to attend at minimal expense.
RAREsummit development and operational team
Jo Balfour
Managing Director
Lindsey Brown
Events consultant
CamRARE trustee and RAREsummit advisory team
Dr. Gemma Chandratillake
Chair & genomics ed expert
Dr. Tim Guilliams
Founder, trustee & biotech CEO
Dr. Sarah Leiter
Trustee & medical doctor
Dr. Jonathan Milner
Trustee & biotech entrepreneur
Dr. Ron Jortner
Trustee & biotech CEO
Sue Berry
Trustee & rare disease parent
Ilan Chaitowitz
Trustee, treasurer and equity investor