A Fairer Future: Rare Disease report launch

PPP’s Rare Disease report launch reception, giving a voice to patients and their families.

About the report launch reception

The report launch reception for A Fairer Future: Towards a more equitable delivery of care for those with rare diseases in the UK will take place on the 7th July at One Great George Street, London.

During the first half of the evening you will hear from our excellent speakers on some of the key points covered in the report. After which, there is the opportunity to network during the drinks reception.

The report is unique, as it’s been created with the voice of the patients and their families at the forefront of discussions, and importantly, is aimed towards a more equitable delivery of care for those with rare diseases in the UK. We are delighted to be joined for drinks by the main contributors of this report; patients and their families. Join us as we discuss the healthcare system from their often overlooked point of view.

This event is free to attend and relevant for policy, academic and private sector leaders, patients, patient organisation representatives, and patient advocates.

About the report

Collectively, rare diseases are numerous. Individually, however, the numbers of those with rare disease can vary, from tens of thousands to single digits.

Many patients and patient advocates speak of the drawn-out diagnostic odyssey they face, the limited access to treatments or drugs, the lack of awareness amongst the medical professionals they encounter, and lastly the disparate journey through the health system that many experience due to the lack of coordination of care. As a result, patients and their families are forced to navigate the system at great personal, financial, and emotional cost. This cannot continue.

As the Rare Disease Action Plans continue to be published across the UK it is essential the system does not remain a postcode lottery.

Building an equitable health and care system for those with rare diseases and conditions must be the priority. This report explores how we can begin to work towards it.

Placing the voice of the patients and their families at the forefront of the discussions, this is a patient led report.

Speakers:

• Alastair Kent OBE, Independent Patient Advocate and Programme Co-Chair
• Dr Shehla Mohammed, NHS consultant and Paediatric clinical geneticist, Guy’s and St Thomas’ NHS Foundation Trust, and Programme Co-Chair
• Anna Dickinson, Senior Policy Analyst and Report Writer, Public Policy Projects

Why should you attend?

This is an opportunity for policy, academic and private sector leaders to network and meet, with each other and also with patients, patient organisation representatives, and patient advocates.

Join us and discover how placing the voice of the patients and their families at the forefront of the discussions, allows for an incredible insight on how best to solve issues these people face every single day.