Sharing is caring: Rare diseases patients take centre stage

by | 27 Feb 2018

Rare diseases are finally in the spotlight. Share4Rare, a new awareness platform, moves patients centre-stage and opens new opportunities for patient engagement.  
After decades of neglect, there is real momentum behind improving care for patients with rare conditions. There are between 5,000 and 8,000 rare diseases and, while each of these is rare, millions of people and their families are affected.
The biggest challenges for people with rare diseases include low awareness of these conditions, even among medical specialists; difficulty being diagnosed; and a lack of treatments. People affected may also feel isolated because connecting with others in the patient community – unlike more common conditions such as diabetes or arthritis.
Significant improvements have been seen in recent years on a number of these issues. For example, 20 years ago there were just eight drugs available in Europe for rare diseases. Today, thanks to incentives to develop new medicines for small patient populations, there are 150 and more in the research pipeline.
In addition, the EU last year launched 24 European Reference Networks, grouping rare diseases into clusters – such as rare cancers and rare kidney disorders. These new networks are designed to connect health professionals and rare disease patient groups.
Yet there is still significant scope for improving patient engagement and awareness raising in rare diseases. Step forward, the Share4Rare initiative: a new collective awareness platform for social innovation. Supported by the European Commission, this consortium brings together patients, caregivers, researchers and others to pool their intelligence on rare diseases.
The platform will be built on three pillars: education, sharing and research. Beginning with two paediatric conditions – rare neuromuscular disorders and rare tumours – the network will ultimately grow to connect rare disease communities in a large number of fields.
This ambitious initiative is not starting from scratch: it will build on a previous project – Rare Commons – a platform which showed how collective intelligence from parents of children with rare diseases can help to expand understanding of these conditions. The Share4Rare initiative will expand on this work in two ways:

  • By developing a platform based on a bottom-up model with a patient-centred design
  • By promoting synergy in grouping diseases that share common features

The online platform is currently in development with strong input from The Synergist – the organisation that powers PFMD. The team will bring insights and technical knowhow from the SYNAPSE tool which maps patient engagement initiatives around the world. The new Share4Rare platform will go live in early 2019.
We are delighted to see The Synergist’s PFMD model integrating into this new rare diseases initiative which was launched in Barcelona in January. In the year ahead, several activities are scheduled as we develop the platform and devise new ways to engage rare disease patients. We’ll keep you posted!                                                
The Share4Rare Consortium:
Coordinator: Fundació Sant Joan de Déu 
The World Duchenne Organization
Melanoma Patient Network Europe
Omada Interactiva
Universitat Politècnica de Catalunya 
The Synergist 
Newcastle University 

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