Please note that our ‘Working with the medicines industry policy can be found here.

The Tuberous Sclerosis Association (TSA) recognises the importance and value or working collaboratively with all stakeholders who have an interest and focus in Tuberous Sclerosis Complex (TSC), including the pharmaceutical industry.

Being open to cooperation and support from the pharmaceutical industry gives the TSA an important opportunity to drive forward our mission of providing help for today and a cure for tomorrow. By working collaboratively with the pharmaceutical industry, the TSA is able to work more decisively and effectively to improve lives in the TSC community.

The income generated from working with the medicines industry is just one of the many income streams that the TSA relies on to continue to exist. Without a wide range of supporters – from individual givers, fundraisers, corporate and industry – we would not be able to be here for the TSC community.

The ways in which we might collaborate with the pharmaceutical industry include:

• When a new TSC medicine is being considered for approval and funding by UK decision-makers, so that the TSC community in the UK has access to the best care possible
• Ensuring that the pharmaceutical industry recognise and understand the shared needs and desires of the TSC community in the UK, so that the industry has the needs of those that matter the most – people affected by TSC – at the forefront of their research and work
• Developing opportunities for specialist TSC and non-specialist healthcare professionals to have greater awareness of best practice in TSC diagnosis, care and management, and of TSC as a whole

Although the TSA welcomes greater collaboration with all TSC-focused stakeholders, we will not permit any individual, group or company to influence our important work for the TSC community from a purely commercial interest. We are committed to acting with independence, and we will always act with the needs of the TSC community at the heart of our work. We will only accept and seek collaboration with pharmaceutical companies when we believe that the partnership can enhance our own work for the TSC community and will ultimately improve the lives of people affected by TSC.

As a member of the Association of Medical Research Charities (AMRC), the TSA’s commitment to ethical collaboration with the pharmaceutical industry is in-line with the AMRC’s own principles of working with independence, integrity and transparency. In addition, most pharmaceutical companies that we may consider working with are bound by the Association of British Pharmaceutical Industry’s (ABPI) Code of Practice, which outlines clear and strict working practices when cooperating with patient groups and charities like the TSA.

The TSA may occasionally seek or accept sponsorship from the pharmaceutical industry. These funds may be used to help the TSA in a range of ways, such as to help manage ongoing costs or to allow us funding to develop new projects. This allows the TSA to continue to be here for the TSC community, with our charity able to operate only thanks to donations from a wide range of stakeholders. However, the TSA will only accept funds from the pharmaceutical industry when there is a clear strategic fit between us and the company, ultimately with the aim of improving lives in the TSC community.

If a pharmaceutical company chooses to sponsor any of the TSA’s activities, they do so knowing that this in no way represents an opportunity to influence our focus, policy or direction. Any sponsorship also does not in any way offer an opportunity to influence policymakers or to develop commercial advantage of any sort.

We are committed to being completely transparent and open with all stakeholders about what sponsorship we have received from the pharmaceutical industry, which is listed below. The list of funds received by the pharmaceutical industry does not include any corporate fundraising that has taken place by individuals or groups at different organisations, which is also greatly appreciated (read more about corporate fundraising here).

Medical and pharmaceutical sponsorship 2022

• Jazz Pharmaceuticals (£12,000)
  Sponsorship of the NHS TSC Clinics Network – a new network to help greater collaboration, networking and communication amongst NHS TSC clinics across the UK. Sponsorship of the NHS TSC Clinics Education Meeting 2022 – an annual opportunity for clinical professionals to be educated on and discuss TSC

• PlusUltra Pharma (£10,000)
  Sponsorship of the NHS TSC Clinics Network – a new network to help greater collaboration, networking and communication amongst NHS TSC clinics across the UK. Sponsorship of the NHS TSC Clinics Education Meeting 2022 – an annual opportunity for clinical professionals to be educated on and discuss TSC

• Jazz Pharmaceuticals (£1,790)
  Involvement fee for the TSA Chief Executive and TSA Head of Research and Policy to participate in a new project to explore if Epidyolex improves TAND symptoms in people with TSC

• Jazz Pharmaceuticals (£300)
  Payment for TSA Chief Executive and TSA Head of Research and Policy to give an overview of the charity’s work to Jazz Pharmaceutical staff and to take part in a panel Q&A about TSC

Medical and pharmaceutical sponsorship 2021

• GW/Jazz Pharmaceuticals (£20,000)
  Sponsorship for International TSC Research conference held in June 2021

• PlusUltra Pharma (£20,000)
  Sponsorship for International TSC Research conference held in June 2021

• GW/Jazz Pharmaceuticals (£10,000)
  Unrestricted educational grant in response to TSA Coronavirus Emergency Appeal 2021

• PlusUltra Pharma (£3,000)
  Unrestricted educational grant in response to TSA Coronavirus Emergency Appeal 2021

• Novartis Pharmaceuticals (£2,500)
  Virtual conference stand at International TSC Research conference held in June 2021

• Noema Pharma (£1,740)
  Sponsorship for International TSC Research conference held in June 2021

• GW/Jazz Pharmaceuticals (£1,260)
  Payment per participant for developing a caregiver interview guide, and encouraging completion of an online QoL survey about impact of TSC on carers

• GW/Jazz Pharmaceuticals (£577)
  Involvement fee for taking part in a Europe-wide TSC Patient Advisory Group on Epidyolex (cannabidiol)

Medical and pharmaceutical sponsorship 2020

• GW/Jazz Pharmaceuticals (£2,000)
  Sponsorship for International TSC Research Symposia held in November 2020

• PlusUltra Pharma (£2,000)
  Sponsorship for International TSC Research Symposia held in November 2020