Gene People responds to consultations about national policy that impact the genetic conditions community, reflecting the experience of those who use the Helpline and our Partnership Network members.
We aim to be transparent and publish our responses.
‘A Day of Discussion: The ELSI Conference 2025’ Authors: Emily Clarke, Tara Clancy, Amy Hunter, Faye Johnson, Simon Jones, Sinduja Manohar, Gracie Mellalieu, Yvette Mellalieu, Melissa McKie, Arti Patel, Peter Style, Shelley Wagon, Sarah Wynn – Download as a PDF or Download as a Word document
Response to the Genomic Medicines Service Specification – Download as a PDF or Download as a Word document
Response to the Major Conditions Strategy consultation – Download as a PDF or Download as a Word document
Response to the proposed rise in rate for the Statutory Scheme – Download as a PDF or Download as a Word document
Response to the Clinical Genomics Service Specification Consultation – Download as a PDF or Download as a Word document
Response to the NICE Review – Download as a PDF or Download as a Word document
Response to the MHRA medical devices regulation consultation – Download as a PDF or Download as a Word document
Response to the UK Rare Disease Framework England Action Plan consultation – Download as a PDF or Download as a Word document
Response to MHRA consultation on clinical trials – Download as a PDF or Download as a Word document
Response to Mental Health and Wellbeing Plan consultation – Download as a PDF or Download as a Word document
Response to the 10 Year Health Plan – Download as a PDF or Download as a Word document
Response to the NICE Rare Disease Quality Standard – Download as a PDF or Download as a Word document
Response to the DHSC NICE regulations – Download as a PDF or Download as a Word document
Signed open letters
Gene People signs open letter on cell and gene therapies
Gene People has signed a cross-sector open letter to the Secretary of State for Health and Social Care calling for stronger national leadership on cell and gene therapies.
The letter urges the Government to appoint a dedicated Ministerial lead and to work with stakeholders to ensure timely, safe and equitable access. While recent commitments on investment and NICE thresholds are welcome, further action is needed to address regulatory, reimbursement and adoption challenges.
Download as a PDF or View on LinkedIn
Gene People joins call for a rare diseases clinical lead
Gene People is among the organisations backing a joint letter to the Secretary of State for Health and Social Care and the Chief Executive of NHS England, calling for the appointment of a National Clinical Director for rare diseases.
As we look forward to the development of the next UK Rare Diseases Framework, now is the time to strengthen clinical leadership. A dedicated director would help drive progress across care, research and service planning, ensure the experiences of patients and families inform decision-making, and bring greater coordination across the system.
Download as a PDF or View on LinkedIn
