We’re supporting and attending RARE Summit 21 on 7 October 2021 – a virtual 1-day summit organised by the Cambridge Rare Disease Network.
RARE Summit 21 will circle back to some of the keynote speakers and themes from CRDNs first event in 2015 and look at what progress has been made and what are the visions and plans for the future.
Hear from, learn from, and network with a range of stakeholders: patients; patient advocacy groups; researchers; healthcare and industry professionals.
Vibrant + Vital + Virtual
RARE Summit 21
RARE Summit 21 is CRDN’s 5th major conference, our first held at Cambridge Judge Business School in 2015 with a room packed with the greatest minds in rare diseases from Cambridge and around the world. Professor Stephen Hawking gave a video address to share his own rare journey and a panel of Cambridge pioneers including Hermann Hauser and Jonathan Milner explored what Cambridge could do to help accelerate progress in rare diseases.
There are over 40 key opinion leaders taking part in panel discussions, fireside chats, workshops and live pitching sessions alongside over 20 interactive exhibition stands, short films, and posters in the gallery.
Head over to the RARE summit 21 website to find the draft programme, speaker details, and summit highlights with more details being added over the coming weeks.
Find out more at https://www.camraredisease.org/raresummit21
We’re proud to be supporting the RARE Summit 21 event by Cambridge Rare Disease Network.
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Visit our About FibroFlutters page
Visit our Rare Disease Advocacy page for our rare disease advocacy arm – ZebraStrutters
FibroFlutters / ZebraStrutters:
We are a Patient Advocacy Organisation & online social media communications network.
Our services are for people affected by chronic illnesses and rare disease. This includes patients, care providers, health professionals and those within the medical healthcare and life-science related industries. #notjustpatients.
Working to help develop, nurture, and help to create a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need.
With a focus on Ehler’s Danlos Syndromes, Pigmented Villonodular Synovitis, Fibromyalgia but, also, including musculoskeletal disorders and associated rare diseases. There are over 300 undetermined musculoskeletal conditions with many of them causing high rates of work absenteeism and disability.
The work we do
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Our efforts also include advocating for the need to improve patient engagement processes within the drug development process and research and development. Hoping for the better development of therapies and treatments within the pharma, medical, and clinical environments. For instance, involving patients and teams of multi-stakeholders from across the health, medical and clinical research landscapes including academia and pharma.
Providing relevant health information from respected and reputed resources is important to ensure that people are educating themselves from proper places. A better way to provide support and relief to patients, their families, and their caregivers. This also aids the advancement of public education by raising awareness of the need for multi-disciplined patient healthcare pathways, and access to care. Such ‘approaches’ which can help to change patients’ lives for the better by meeting their needs.
We advocate and encourage more efficient patient engagement practices with a view to the better development of therapies and treatments within the pharma, and clinical, environments. Working on projects and in partnerships, to enhance patient engagement, and speak at varying events to spread the mission of FibroFlutters.
Why we advocate for a multi-disciplined approach to our healthcare.
Patients with chronic and rare conditions are left to manage life with multiple chronic disorders and very little healthcare support. Usually, only getting to see one specialist at a time when the conditions run in line with each other sharing comorbidities etc. We need our health looked at holistically and is why we advocate for a multi-disciplined approach to our healthcare.
For better treatments, products and patient healthcare we believe that the collaboration of minds from within pharma, medical, clinical and life-sciences can provide optimal results. Engage with patients and add the patient voice and results could be more than optimal!