REACH (Registration, Evaluation, Authorization and Restriction of Chemicals) is the EU’s main regulation on chemicals, which came into force in 2007. It determines how companies register new substances, assesses the risks, and restricts or bans any hazardous chemicals from entering the market. The European Commission is now working on a long overdue draft revision which was scheduled to be published in Q4 2025 but is now likely to experience further delay following a negative opinion from the European Commission’s internal watchdog, the Regulatory Scrutiny Board (RSB), on the conducted impact assessment that accompanies the legislative proposal. The responsible Directorate Generals in the European Commission will now have to rework and resubmit the impact assessment.  

ECHA publishes an updated text for their advice on the PFAS restriction proposal 
On 20 August 2025 the European Chemicals Agency (ECHA) published an updated version of PFAS restriction proposal which aims to address the health and environmental hazards related to PFAS (also known as "forever chemicals"). We closely follow this file due to the strong association between PFAS and the onset of endocrine conditions. While we welcome this update which includes a continuous commitment to aim for a more general PFAS restriction instead of individual assessments, we remain concerned about several elements in the updated proposal that in our view should be addressed in ECHA´s final opinion. Together with our partners we will soon publish a more detailed statement.  

Fierce critique from UN human rights experts on EU chemical deregulation push 
Efforts by Brussels to dilute the bloc’s chemical laws are undermining the European Union’s credibility as a “global leader in green policy and the rule of law,” Marcos Orellana, a top UN human rights official, has warned in a letter shared with POLITICO in early October. The source of Orellana’s concern is a European Commission proposal, published in the summer, to simplify a set of EU laws spanning cosmetics, fertiliser and chemical classification regulations in a “chemicals omnibus” bill. ESE and partners also responded to the publication of the omnibus in early July by means of a joint statement.  

More than 20 EU politicians test positive for PFAS in their blood 
A group of 24 European politicians including Jessika Roswall, the current EU Commissioner for Environment Water Resilience and a Competitive Circular Economy were tested over the summer for the presence of PFAS chemicals in their blood. On 7 October the results were communicated by the NGOs involved, which showed that all had the substances in their bodies. Read the full story here.  

EU to ban use of PFAS in firefighting foam 
On 10 October the EU took a small, but important step forward in banning PFAS from our environment by placing restrictions on their use in firefighting foams. Firefighting foams have been one of the main sources of PFAS pollution in the European Union to date, according to the European Commission. Read the full article here.  

We strongly believe that the EU should have a central role in tackling rare diseases. The EU is in the best position to unite diverse healthcare systems, research institutions, and patient groups to work towards common goals. For rare diseases—where fragmentation is a major obstacle—this kind of large-scale integration and cooperation is exactly what's needed. 

Since 2021 there has been growing momentum for a European Action Plan on Rare Diseases (EARP). The idea is to have a coordinated, EU‑level strategy that would: 

• Harmonise and strengthen rare disease policies across member states 
• Set measurable targets (for example, diagnostic delay, treatment access, number of new therapies) 
• Improve infrastructure such as registries, cross‑border networks, data sharing, reference centres of expertise, etc.  
• Encourage research and innovation, including funding, collaboration 

The push is mainly driven by Eurordis, a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases that promotes research on rare diseases and commercial development of orphan drugs. ESE is in contact with this key stakeholder and we sometimes work together. A Eurordis team member will for example speak at the ESE Hypoparathyroidism Patient Forum on November 15.  

Where does the debate currently stand and who are the stakeholders involved? 

Besides Eurordis, key players in the debate are the European Parliament (EP), the European Economic and Social Committee (EESC) and the European Commission. The EESC voiced strong support for a comprehensive plan in October 2024 during their October 2024 Plenary Meeting. According to the EESC Opinion, the plan should have SMART targets that can be achieved by 2030. SMART stands for specific, measurable, achievable, relevant and time bound.   

Also, in the EP there is strong cross-party support for such a plan. During a plenary session in April 2025, MEPs called for a dedicated, strategic framework and to pool European and national resources to more effectively address the many challenges at hand. The European Reference Networks were also mentioned as a key tool to address rare diseases and a foundation to be built on.  

Despite the pressure from Eurordis and its members, the EP and the EESC, the Commission has not made any firm commitments to the development of an EARP. It currently considers their activities based on the Commission Communication on Rare Diseases, the Council Recommendation on action in the field of rare diseases, and the Cross-Border Healthcare Directive sufficient, even though these documents from 2009 and 2011 could be considered slightly outdated by now.  

Relatively absent from the debate are the member states, the pharmaceutical industry, but also most medical societies.  

ESE has made several calls for a comprehensive EARP, most notably in our White Paper from 2021, but also for Rare Disease Day (28 or 29 February each year) and on World Hormone Day (24 April). In addition, we promoted the important function of the European Reference Networks with a focus on the important work of Endo-ERN.  

The benefits a future action plan could have for rare endocrine diseases 

Over 6,000 rare diseases, and over 400 in endocrinology, have led to 30 million rare disease patients in Europe. Currently there is a cure for only 6% of these rare diseases. Consequently, there is a very high unmet need in this area that remains unaddressed.  

Eurordis’s recommendation for an EARP has the potential, if implemented correctly, to significantly speed up diagnosis and increase treatment options. Amongst others, the recommendations aim to reduce premature deaths, develop 1,000 medicinal products and diagnose every person within six months instead of the current five-year average.  

If even some of these objectives could be accomplished, this could really change the outlook for rare disease patients and their families. We will continue to work on better prospects for those with rare endocrine conditions and/or other rare diseases and continue our ask for an urgently needed EARP.  

The legacy event “Minimising the impact of Endocrine Disrupting Chemicals (EDCs) on Health and Environment" took place on 14 May 2025 directly after the Joint Congress of European Society of Paediatric Endocrinology (ESPE) and ESE in Copenhagen. The high-level event discussed the current challenges and opportunities to address the continuous presence of numerous hazardous chemicals in our environment. The event was organised by ESE, ESPE and the Danish endocrine community, and was supported by Copenhagen Legacy Lab.  

Who attended?  

The event was attended by more than 280 participants from across the globe both in person and online. Approximately 70% were researchers or clinicians, often connected with the ESPE or ESE community. The remainder were national or EU or policymakers, NGO staff, industry representatives and patient organisations. The high and varied attendance of policymakers from different European countries really helped the event to achieve one of its core objectives - to influence the European policy environment and ensure that policymakers become more familiar with the latest scientific developments around EDCs.  

For those who did not manage to attend, you can see highlights from the event here as well as all presentations and other materials on the event website. In addition, our partners from the Copenhagen Legacy Lab also produced a video that focuses on the Legacy aspect of the event which gives good context about how the event was developed.  

What has been the impact so far? 

In addition to successfully reaching a wide range of policymakers across Europe and presenting them the latest science around EDCs, the event had broad social media exposure with over 166 000 impressions from content on ESE’s channels alone. The total reach is likely to be much higher as speakers, partner organisations and other key opinion leaders within our community actively promoted the event and disseminated its key messages.  

The event was also covered by several online media outlets including in an editorial in Politiken by Member of the Danish Parliament and speaker at the event ´Karin Liltorp´.  

However, we are most proud on how the event inspired and encouraged the audience to act and take the messages from the event forward to their own communities. Over 75% of the respondents to the evaluation survey of the event indicated that they expect that their organisation would apply new ideas or knowledge following the event in the form of studies, awareness raising events and/or other means.

This will help the important messages from the Event to continue to be heard. Along with ESPE, we will support these efforts where we can in addition to conducting our own activities to continue placing pressure on European and national policymakers to work towards a legislative framework that effectively protects the population from the many health and environmental hazards of EDC exposure. We call on you to actively work with us towards reaching this goal.