Genomics England partners with the NHS to provide whole genome sequencing diagnostics. We also equip researchers to find the causes of disease and develop new treatments – with patients and participants at the heart of it all.

Our mission is to continue refining, scaling, and evolving our ability to enable others to deliver genomic healthcare and conduct genomic research.

We are accelerating our impact and working with patients, doctors, scientists, government and industry to improve genomic testing, and help researchers access the health data and technology they need to make new medical discoveries and create more effective, targeted medicines for everybody.

In November 2023, the government announced its support for the Rare Therapies Launch Pad, a new programme that will develop a pathway for children with rare conditions to access individualised therapies. The programme’s first project will explore the use of individualised therapies known as antisense oligonucleotides (ASOs) to treat children with ultra-rare and life-threatening brain conditions.

The pilot is developed by a consortium including Genomics England, the Medicines and Healthcare products Regulatory Agency (MHRA), Oxford-Harrington Rare Disease Centre, Mila’s Miracle Foundation and the Association of the British Pharmaceutical Industry (ABPI). It will help identify a sustainable and scalable approach to delivering individualised therapies for children across a wider range of rare conditions, including establishing a proportionate regulatory pathway. This end-to-end pathway would cover diagnosis, the design and rapid manufacturing of these therapies, and treatment. The project also aims to generate evidence to help establish potential reimbursement for individualised therapies beyond the pilot.

Following years of significant investment in life sciences, including across genomics and innovative medicines regulation, the UK is uniquely placed to deliver the Rare Therapies Launch Pad. This is a world’s first model and one that potentially could change the pathway of access to genetic medicines.

We seek a remarkable set of abilities in an appropriate individual for this unique opportunity as Programme Lead - Rare Therapies Launchpad on a 6 month FTC to collaboratively sculpt and execute this groundbreaking venture into pioneering rare therapeutic solutions. At the end of 6 months, the Programme Lead will transfer to the new entity.

Your role will include but not be limited to the development of the structure, function and governance of a pilot project, working closely with the Board of Directors of the bespoke Community Interest Company (CIC), experts and the wider RTLP consortium, plus a range of stakeholders within the ecosystem (as directed by the Board).

The key accountabilities will be:

• Working with direct stakeholders, help shape and deliver a pragmatic and ambitious business plan for the programme that fulfils the goals of the pilot and sets out a multi-year strategy for the project.
• Establish clear governance, decision-making process and ways of working, agree with stakeholders and implement.
• Work with the comms subgroup to create and maintain a clear communications strategy, that responsibly delivers visibility to the project. 
• Set up a clear roadmap of deliverables based on the principles and ambitions of the new pathway with the creation of relevant workstreams.
• Be responsible for the day to day operational and administrative running of the pilot including balancing the needs of competing stakeholders and delivering and reporting on the workstreams.
• Support and organise project workshops and meetings as required.
• Manage and ensure good governance and compliance with all relevant requirements including budgets, business planning, risk management, monitoring and control.
• Set up and provide reporting on major programme deliverables with guidance from the Board and wider members; ensuring these are included as a central part of operations, considered in governance, and risks to delivery escalated. This will include, but won’t be limited to, workstreams on ethics, communications, regulatory, reimbursement and the process for participant selection

We are interested in relevant qualifications of course, however, even more so, we specifically seek exceptional individuals with a range of relevant project/programme management leadership experience within the healthcare system, gained within academia or industry, perhaps HTA bodies or within the NHS.

Salary from: £89,250.00

This role is being hired on a 6 month fixed term contract basis and this could be part time or full time, perhaps on a 3, 4 or 5 day week.

Due to the nature of the role and the skillset required, we would consider this role on a secondee basis.

Being an integral part of such a meaningful mission is extremely rewarding in itself, but in order to support our people, we’re continually improving our benefits package. We pride ourselves on investing in our people and supporting them to achieve their career goals, as well as offering a benefits package including: 

• 30 days’ holiday (plus bank holidays), with additional days for long service awards
• A generous pension scheme of up to 15% combined contribution
• Life Assurance (3 x salary)
• Individual learning budgets for every colleague, a Blinkist account and a wide variety of courses on our portal
• A wide variety of wellness benefits including Gympass, a Headspace account, free weekly Yoga classes
• Enhanced maternity & paternity benefits
• Blended working arrangements

Genomics England is actively committed to providing and supporting an inclusive environment that promotes equity, diversity and inclusion best practice both within our community and in any other area where we have influence. We are proud of our diverse community where everyone can come to work and feel welcomed and treated with respect regardless of any disability, ethnicity, gender, gender identity, religion, sexual orientation, or social background.

Genomics England’s policies of non-discrimination and equity and will be applied fairly to all people, regardless of age, disability, gender identity or reassignment, marital or civil partnership status, being pregnant or recently becoming a parent, race, religion or beliefs, sex or sexual orientation, length of service, whether full or part-time or employed under a permanent or a fixed-term contract or any other relevant factor. 

Genomics England does not tolerate any form of discrimination, harassment, victimisation or bullying at work. Such behaviour is contrary to our virtues, undermines our mission and core values and diminishes the dignity, respect and integrity of all parties. 

Genomics England operates a blended working model as we know our people appreciate the flexibility. We expect most people to come into the office 2 times each month as a minimum. However, this will vary according to role and will be agreed with your team leader. There is no expectation that staff will return to the office full time unless they want to, however, some of our roles require you to be on site full time e.g., lab teams, reception team. 

Our teams and squads have, and will continue to, reflect on what works best for them to work together successfully and have the freedom to design working patterns to suit, beyond the minimum. Our office locations are Canary Wharf, Cambridge and Leeds.

As part of our recruitment process, all successful candidates are subject to a Standard Disclosure and Barring Service (DBS) check.  We therefore require applicants to disclose any previous offences at point of application, as some unspent convictions may mean we are unable to proceed with your application due to the nature of our work in healthcare.