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PPP Specialist Series

Rare Diseases

PPP’s Rare Diseases Programme 2024 will look to understand and address UK and local-level requirements for effective treatments for rare diseases.  

Rare Diseases Programme 2024

PPP’s Rare Diseases programme will focus on the challenges in the UK to delivering effective treatments to the 3.5 million people living with one of an estimated 8,000 rare conditions.

While genomic testing has the potential to improve the diagnosis for rare conditions, we still do not have effective treatments for around 95 per cent of these conditions. The UK must build an environment that encourages further innovation in rare diseases to ensure a steady and active pipeline of novel therapeutics that can be delivered to patients.

PPP’s Rare Diseases Programme 2024 consists of:

  • three virtual invitation-only roundtable discussions considering the challenges to the production, delivery, and funding of novel therapeutics for rare diseases. 
  • A PPP Report capturing the recommendations from the programme, which will be launched at the Global Genomics and Rare Diseases Conference 2024.  

The programme will include the participation of a rare disease patient advocacy group, to ensure the outcomes are both credible and practical. 

For more information about attending the roundtable discussions, contact Seve Loudon at seve.loudon@publicpolicyprojects.com.

Upcoming events 2024

Rare Diseases Programme 2024

All PPP events are free for the Public Sector including NHS Organisations, Local Authorities, academics, researchers, not-for-profit and third sector providers and charitable sectors. A limited number of Private Sector Tickets (suppliers) are available at £499.99 per ticket.

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Chi Onwurah PPP

Related content:

Be a PPP Partner for Rare Diseases

Various levels of Partner opportunities exist for PPP’s Rare Diseases Programme in 2024.  For more information contact Dr Chris Rice on chris.rice@publicpolicyprojects.com.

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