Varhelyi, Metsola, and De Meo agree: “The EU can and must do more on rare diseases”

Brussels – A silent war is being waged in the homes of thousands of European families, a conflict characterised by missed diagnoses and slow bureaucracy, but one that has now reached the European Parliament. In the spotlight in Brussels, the event “PANS and PANDAS: A bridge between science, healthcare and European policies“ marked an important milestone for two paediatric neuropsychiatric disorders. The organiser, Forza Italia MEP Salvatore De Meo, immediately made it clear that “the EU can and must do more” regarding rare diseases and emphasised that “institutions must take note of these two complex diseases, which are extremely debilitating for families and young people.” 

According to De Meo, Italy is at the forefront and is charting the course: “Today’s aim is to make a concrete contribution to the work Italy is carrying out on PANS and PANDAS so that it can become a benchmark and further stimulate not only research, but above all training and support for families.” On the financial front, De Meo confirmed that Commission funds have been allocated for rare diseases in the upcoming Multiannual Financial Framework: “Funds have already been earmarked for rare diseases, but the discussion with the Commissioner was very positive, and our request for specific attention to be paid to these conditions is clear.”

An appeal that was immediately echoed in the empathetic words of the President of the European Parliament, Roberta Metsola: “To the parents of children diagnosed with PANS or PANDAS, I say that your children are fighting an invisible war, but their pain is not. We must do more to ensure that every patient in Europe has access to diagnosis and treatment,” she said, pledging the Parliament’s commitment to “supporting research and innovation to develop increasingly accessible therapies.” The EU Health Commissioner, Olivér Várhelyi, also acknowledged that the continent’s scientific leadership is not enough: “When it comes to science, Europe is well placed, but for rare diseases we need to do more, strengthening the link between research, innovation and patient care.” Recalling past investments, Várhelyi pointed out that between 2007 and 2020, the Commission allocated “€3.2 billion to research into rare diseases,” but the challenge remains.

The families’ cry of pain and defiance was taken to Brussels by Lalli Fabridi (PANS-PANDAS Parents Association), who denounced an unacceptable isolation: “Our children are invisible because this syndrome is not recognised. Getting a diagnosis and therefore treatment is still very difficult.” Fabridi pointed the finger at the social divide because “treating a child with PANS-PANDAS syndrome today often means having the financial resources to travel from one country to another, and this is unacceptable.” While the Association is working on “drafting the first national guidelines to be recognised by the Italian National Institute of Health,” Dr Vincenzo Casaregola, head of institutional relations at the PANS-PANDAS Parents’ Association BGE, issued a final, crucial warning regarding the need for prompt action: “This syndrome can be cured, but prompt intervention is required. A failure to diagnose leads to the condition becoming chronic, with serious consequences even in adulthood, both on a human and socio-economic level,” he explained. Europe has been warned: the invisible must become a priority.