Biotechnology is helping to change how health conditions are diagnosed, treated and managed. For people and families affected by inherited lipid conditions, scientific progress may bring new tests, treatments and hope for the future.
Biotechnology uses living cells, genes or other parts of nature to develop new medicines, tests and treatments. Put simply, it uses science based on how the body works to find new ways to prevent, diagnose and treat health conditions. For people and families affected by inherited lipid conditions, this progress may bring better tests, new treatments and hope for the future.
However, progress only has value if it meets patients’ real needs and people can access it. The European Patients’ Forum (EPF) has published recommendations for the upcoming European Parliament negotiations on the EU Biotech Act. Discussions began in parliamentary committees in June 2026, with amendments submitted in July 2026. Negotiations are expected to intensify during autumn 2026, although no final date has yet been announced. The European Patients’ Forum is calling for patients and patient organisations to have a meaningful role in shaping decisions about biotechnology, clinical research and access to new medicines.
People living with inherited lipid conditions need innovation. But from a person living with these conditions point of view, innovation is not simply about creating a new treatment. It must also mean:
The EPF is asking policymakers to strengthen patient involvement in the design and oversight of clinical trials. It also wants to make it easier for patients to take part in trials across national borders. This is particularly important for people with rare conditions or limited treatment options, as the right clinical trial may not be available in their own country.
The recommendations also raise an important concern about balancing incentives for companies with patients’ ability to access medicines. Supporting research and development is important. However, public funding and other support should come with transparency, accountability and clear benefits for patients. New medicines should not remain out of reach because of their cost, where someone lives or differences between healthcare systems. From a patient’s perspective, a treatment cannot improve lives if people cannot receive it.
We are experts in their own lives right. The person living with the condition, those who care and support them understand the daily reality of living with an inherited lipid condition. They know the challenges of finding a diagnosis, managing lifelong treatment, what can stop someone from engaging in therapies, attending appointments, taking part in research and trying to access specialist care. This knowledge should be included from the beginning, not requested only after decisions have already been made. The EPF is therefore calling for permanent patient representation within the groups supporting the implementation of the EU Biotech Act. At a minimum, it wants regular and structured consultation with patient organisations, with proper support for representatives who contribute their time and expertise.
Getting it right matters and the negotiations are moving quickly. The EPF warns that speed must not come at the expense of careful discussion, public health, patient safety or meaningful patient involvement. For the inherited lipid conditions community, the message is clear:
Develop new solutions with patients, not simply for patients.
FH Europe Foundation supports a future where research and innovation lead to earlier diagnosis, better care and fair access to effective treatments, but more than that we believe persons living with the condition, their carers and families must have a meaningful voice in building that future.
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Written by Elsie Evans