Response to interpellation 2025/26:390 on national strategy for rare health conditions
Translated from Swedish by AI; the translation may contain errors. The Swedish text is the original.
Summary AI, written in advance
The debate concerns a national strategy for rare health conditions. KD argues that the government intends to make decisions on the strategy within not too far in the future 1 2. KD emphasizes that the government has already tasked Socialstyrelsen with spreading knowledge in primary care to shorten the path to diagnosis 3. KD highlights that Sweden is at the forefront of precision health and that the government is investing in equitable implementation of the technology 1. KD considers it important to strengthen support in municipalities so that parents do not have to be full-time coordinators 2. S argues that it is important that the government now produces a national strategy 4. S emphasizes that coordination is crucial 4 5.
Written by AI in advance and may contain errors. The numbers lead to the speech a statement builds on; check against the text below.
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! Alexandra Völker has summarized by asking when I and the government intend to make a decision on the national strategy for rare health conditions and how the reinforced healthcare investment of 450 million shall be used to ensure the implementation of the strategy.
As Alexandra Völker points out, approximately 500,000 people in Sweden live with a rare health condition. The low prevalence of each individual health condition entails specific challenges for the individual and relatives, but also for the health and medical care system as a whole. In their question, the interpellator points out that Socialstyrelsen has been tasked with developing a proposal for a national strategy aimed at strengthening patients' access to equitable health and medical care of good quality (S2024/00038).
In the draft strategy from the National Board of Health and Welfare, which was presented on May 13, 2025, several focus areas are proposed, such as early diagnosis, better coordination of healthcare interventions, and increased knowledge of health conditions. The proposal is currently being prepared within the Government Offices.
The Government agrees that several of the focus areas identified by the National Board of Health and Welfare are important. In order to improve knowledge of rare health conditions within health and medical care as early as now, the National Board of Health and Welfare has been tasked with carrying out targeted interventions with a focus on information and knowledge dissemination regarding rare health conditions (S2025/01639). The assignment shall be reported by December 31, 2026, at the latest.
The Government intends to return to the issue of the distribution of funds for the work on rare health conditions.
Parallel to the work with the strategy, we are working on the issue of access to medicines for rare health conditions. The development of these medicines represents important advances in medical research and treatment and simultaneously opens up new opportunities for people living with a rare health condition. This is both positive and desirable and benefits both the individual as well as society and the economy as a whole.
The government has for several years invested in introducing precision diagnostics in healthcare through targeted support to projects run by Genomic Medicine Sweden. The government's commitment to precision health has been strengthened from this year onwards, and work is currently underway to develop the structures for long-term state support that shall accelerate an equitable and equal implementation of precision health throughout the country.
Within the framework of this initiative, the government has during 2025 and 2026 paid out a total of approximately 24 million kronor to a national implementation project for a new method regarding precision diagnostics for patients with rare health conditions. The funds also support national and international work regarding precision diagnostics for children with undiagnosed rare health conditions involving malformations or intellectual disabilities.
I would like to conclude by thanking you for the question. The Government sees a need for a developed and coordinated effort in this area. I understand that this is an important issue for many, and I have therefore had a dialogue with, among others, Riksförbundet Sällsynta diagnoser. It is a dialogue that will also be important moving forward.
Alexandra Völker (S)
Madam Speaker! I would like to begin by thanking the Minister for Health and Care for the answer.
To those who are sitting and listening, I want to say that the debate is about people living with a rare health condition. In order to be categorized as such, it must occur in fewer than 5 out of 10,000 people. It can be so rare that there is only one person in the entire country with that specific health condition. The rarity itself entails that the level of knowledge within healthcare risks being very low.
Even though very few live with any single health condition, an enormous number of Swedes live with one of the approximately 8,000 rare health conditions that actually exist. It concerns about half a million Swedes.
Since these are complex diagnoses, most countries have a specific strategy to ensure good care and early diagnosis. In fact, Sweden and Malta are the only countries in the EU that, at the current time, do not have a national strategy for rare health conditions. It is therefore both good and important that the government has tasked Socialstyrelsen with developing such a strategy. But it has now almost been a year since Socialstyrelsen submitted the proposal to the government, and so far nothing has happened. That was also why I chose to submit this interpellation.
Unfortunately, I did not perceive any announcement in the Minister for Health and Social Affairs' response. Does the government intend to adopt the strategy?
Madam Speaker! I noted that the Minister concluded by mentioning the dialogue with Riksförbundet Sällsynta diagnoser. It is good that the government safeguards the dialogue with the association that gathers people who live with rare health conditions. Riksförbundet is a major source of information and dialogue. I am a member myself and had the privilege for several years of sitting on the association's board. Those were extremely educational years.
From the union and its members, I have learned that we have a long way to go until we have achieved truly equal healthcare. Even though much of Swedish healthcare is fantastic, the system is not built for people with rare, and often very complex, health conditions. Just as the National Board of Health and Welfare itself describes, the reality for many of the patients who have a rare diagnosis is that they have better knowledge about the diagnosis than the health and medical care.
I have met parents whose worst nightmare is having to go to the emergency room. Every time, it becomes a struggle to get the staff to understand that their child's diagnosis means it can become directly life-threatening to handle it in the way they are there for in the usual way. The healthcare staff do not have knowledge of the children's health status, and the parents must act as experts. It is an enormous, and unreasonable, responsibility for the individual.
It is often a long journey to even get a diagnosis. According to the member survey of Riksförbundet Sällsynta diagnoser, it takes an average of seven years to get a diagnosis. Since the diagnoses are often complex with several different symptom patterns, one and the same patient needs to coordinate a large number of different healthcare contacts themselves. According to Socialstyrelsen, patients may need to have up to a hundred different healthcare contacts. Therefore, the coordination that Socialstyrelsen proposes is truly needed.
The National Board of Health and Welfare has now, on the government's assignment, produced a proposal for a strategy. I want to conclude by asking once again: Does the government intend to adopt the strategy, and if so, when?
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! I thank the interpellor again for an important question. She also gave a very adequate and relevant description of the problems for these patients, who cannot be called a patient group because it is inherent in the nature of the matter that they are quite alone in their health conditions and their challenges in finding their way in the entire social system, not only in healthcare contacts but also when it comes to support from the municipality. There are many actors who are to cooperate around the individual, and that places very special demands.
This is also the reason why it is important that the strategy becomes good. It is being prepared now, and I can say that the government intends to make decisions on it within not a very long time. This work has been ongoing for a while, and it is important that it becomes good so that it will be of help.
Let me also remind you that the EU Commission already in 2009 recommended that all countries develop a strategy, so the interpellant's party also had plenty of time to develop a strategy if it had been prioritized. Now this work is taking place, and it is very important that the strategy is put in place and has an effect.
Let me also emphasize that much is being done for people with rare health conditions also in other areas. The strategy does not alone handle and solve the integrated care around these patients, but it is about several parts. Successful strategies and methods of work in other European countries show that it is about succeeding in creating person-centered care – a work that is also ongoing in Sweden.
In order to achieve early diagnosis so that patients do not have to wait seven years to receive the right help, the knowledge must exist in primary care, and above all, there must be conditions for primary care to constitute the hub and be able to route patients correctly within the healthcare system. Support must also be provided from the highest level of specialization, which, when it concerns rare health conditions, may perhaps only exist in one single place in Sweden. The permanent doctor contact in primary care needs to have a well-established contact and receive support regarding the patient in question.
These are structures that must be in place, but which also presuppose that we actually manage to dimension primary care and transition in the way that we all agree we need to do to strengthen Swedish healthcare and let the health center be the gateway into healthcare so that patients avoid having to find their own way through the healthcare system.
Another area that creates high quality for these patients is precision health, and here Sweden is at the absolute forefront. The government has made major investments to ensure that this work continues and develops so that the implementation becomes equitable. It should not matter where in Sweden one lives, but everyone should have the right to the latest technology. We would need to see much more of genetic analyses for these patients because the health condition in approximately 80 percent of cases is due to genetic factors.
Alexandra Völker (S)
Madam Speaker! Once again, thank you for the answer, Minister! I choose to see it as a welcome message and that the decision will hopefully come soon, as the election is approaching.
The Minister said in his response that several of the areas that Socialstyrelsen has identified are important. Does that mean that one will not include all perspectives and parts, or is it just a formulation? I became a bit curious about this. But fundamentally, it is a positive decision.
I agree that this is about much more than just a strategy; a strategy is indeed a first step. Not least, the question of resources is important. Will there be resources to ensure that what is stated in the strategy can also be implemented? And how do you follow up and ensure that the coordination actually takes place? Person-centered care is incredibly important, but just as the Minister is pointing out, a coordination beyond the usual is required when it comes to this type of health condition. All healthcare areas can be involved simultaneously and need to be coordinated. In that case, there must be a healthcare contact who has the right knowledge, and the one who possesses the latest knowledge may even be in another country.
Research is truly moving forward, and it is fantastic. Sweden is at the forefront, and much can happen in the future. But much must also happen here and now for healthcare to improve. Healthcare is central in these cases. The Minister raised the issue of pharmaceuticals, which is also incredibly important, but in my interpellation, I chose to focus on healthcare because it is completely central for all patients with rare health conditions, regardless of which rare health condition they have.
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! Let me clarify this by stating that the government agrees that several of the focus areas identified by the Socialstyrelsen are important. The response also mentions that the government has therefore already tasked the Socialstyrelsen with disseminating knowledge. This work is ongoing and will be finalized at the end of the year. As we have established here today, a great deal of the work is about strengthening knowledge in primary care in order to also shorten the path to diagnosis. Early diagnosis is completely central for these individuals to receive the correct care without having to seek it out themselves.
The increase in knowledge in primary care is therefore completely central, and that is why Socialstyrelsen has been given this assignment. They are to start disseminating information and spreading knowledge now. But they are also to return with proposals on how knowledge in this area generally can be improved so that there is a systematic approach to it. They are also to support the implementation of a coherent care pathway for these patients. They shall also work on highlighting the complexity that follows from the rarity and making visible where the medical expertise is available to support the primary physician contacts so that they can steer correctly and provide good care to these patients.
Several parts of the work are already underway, and it was this that was meant in my answer.
Alexandra Völker (S)
Madam Speaker! I thank you for the clarification – it is appreciated. I choose, as I said, to see it as a clear message, and now we await the decision and a positive outcome. Right now, half a million people are living with rare health conditions, and they are waiting for a clear strategy and clear coordination.
Today we meet many who live with a rare health condition, not least parents, as said. It becomes almost a full-time task for them to try to coordinate, navigate the healthcare system and, in many instances, make incredibly difficult decisions. The coordination can almost take over the entire parental role, and it has a very large impact on these families. Therefore, this is truly a step in the right direction.
It is incredibly important to continue to support the centers that exist, which already function as a coordination hub today, and ensure that they have sufficient resources. I do not know to what extent they have been granted access to the extra funds for implementing knowledge-raising measures that the minister mentioned earlier here. It would also be interesting to hear about that.
Mainly, I want to be clear that early diagnosis, which many seek out and where the need is great, is incredibly important, but also with continued coordination after that. It cannot be that it should fall on the individual to coordinate such a large amount of resources and that one should have to be one's own medical expert.
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! I will be brief. I will need to return when it comes to the exact distribution of the remaining funds. Right Center has, for example, already received 9 million of the funds that have been allocated. When it comes to the money for Socialstyrelsen, it is they who own these funds and decide how they are used in the knowledge-enhancing initiatives. It is of course incredibly important that central actors in this area participate in the work, and we know that Ågrenska and others do.
I really want to emphasize that I appreciate this debate. It concerns a large group that does not have a strong voice because they have such different needs and can easily be forgotten because they are alone or very few when it comes to their specific needs.
That the question is being highlighted is important so that healthcare can become better at strengthening the care of and meeting the needs of this group. Healthcare is very good at meeting what it is used to meeting but worse at meeting people with more rare needs. It lies in the nature of the matter.
I appreciate that the group and the issue are being highlighted. We all look forward to being able to make decisions on the strategy so that we can get it in place.
I would like to take the opportunity to say that we have reason to be proud of the progress we have made within Swedish healthcare. As said, precision medicine opens up completely new possibilities for this group, and I believe that we will be able to do a lot in our area of healthcare here.
Much of the other [issues] that the interpellator raised lies with the municipalities and other social contacts. There, we also need to catch up in strengthening the support so that one as a parent avoids being a full-time working coordinator. It is a very important aspect in this issue.
Thank you very much for an important debate!
Source: The Swedish Parliament. The speeches come from the open data of the Riksdag, translated into English by AI, which may contain errors.