Ehlers-Danlos Syndrome Market
- The Ehlers-Danlos Syndrome Market Size is anticipated to grow at a CAGR during the study period (2020-2034).
- Although considered rare, the true prevalence of Ehlers-Danlos Syndrome is anticipated to be higher than currently appreciated, primarily due to a lack of awareness among the healthcare community. Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common subtype of Ehlers-Danlos Syndrome, accounting for approximately 90% of all Ehlers-Danlos Syndrome cases, the only subtype relying on a clinical diagnosis and currently without a defined genetic basis.
- Establishing the diagnosis of Ehlers-Danlos Syndrome is often problematic for patients, which interferes with the early detection, treatment, and prevention of further escalations of recognized symptoms, disability, and more elaborate complications.
- There is a lack of widespread clinical awareness and the absence of genetic markers for some subtypes (especially EDS, which leads to delayed or missed diagnoses.
- Vascular Ehlers-Danlos Syndrome (vEDS) poses the greatest risk of mortality among Ehlers–Danlos subtypes due to the potential for arterial and organ rupture, yet there are currently no FDA-approved treatments available.
- With no currently approved treatments for vEhlers-Danlos Syndrome anywhere in the world, this breakthrough and orphan drug designation by the FDA marks an important step forward in support of Zevra Therapeutics’ goal to provide treatment options like Ehlers-Danlos SyndromeIVO to rare disease patients, who are often overlooked or underserved.
DelveInsight’s "Ehlers-Danlos Syndrome Market Insight, Epidemiology, and Market Forecast – 2034" report delivers an in-depth understanding of Ehlers-Danlos Syndrome, historical and forecasted epidemiology, as well as the Ehlers-Danlos Syndrome therapeutics market trends in the United States, EU4 (Germany, France, Italy, and Spain) and the United Kingdom, and Japan.
The Ehlers-Danlos Syndrome market report provides current treatment practices, emerging drugs, Ehlers-Danlos Syndrome share of individual therapies, and current and forecasted Ehlers-Danlos Syndrome market size from 2020 to 2034, segmented by seven major markets. The report also covers current Ehlers-Danlos Syndrome treatment practices/algorithms and unmet medical neEhlers-Danlos Syndrome to curate the best of the opportunities and assess the underlying potential of the market.
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Study Period |
2020–2034 |
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Forecast Period |
2025–2034 |
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Geographies Covered |
US, EU4 (Germany, France, Italy, and Spain) and the UK, and Japan |
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Ehlers-Danlos Syndrome Epidemiology |
Segmented by · Total Prevalent Cases of EDS in the 7MM · Diagnosed Prevalent Cases of EDS in the 7MM · Subtype-specific Cases of EDS in the 7MM |
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Ehlers-Danlos Syndrome Companies |
· Zevra Therapeutics, among others |
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Ehlers-Danlos Syndrome Therapies |
· EDSIVO, among others |
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Ehlers-Danlos Syndrome Market |
Segmented by · Region · Therapies |
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Analysis |
· KOL views · SWOT analysis · Analyst views · Reimbursement · Conjoint analysis · Unmet need |
Ehlers-Danlos Syndrome Disease Understanding
Ehlers-Danlos Syndrome Overview
Ehlers-Danlos Syndrome is a group of rare genetic connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. It includes 13 subtypes, with vascular Ehlers-Danlos Syndrome (vEhlers-Danlos Syndrome) being the most severe due to risks like arterial rupture and organ perforation. Caused by collagen-related gene mutations, Ehlers-Danlos Syndrome is diagnosed through clinical evaluation and genetic testing. There are currently no FDA-approved treatments, and management focuses on supportive care, including physiotherapy, cardiovascular monitoring, and pain control. Early diagnosis and increased awareness remain critical for improving patient outcomes.
Ehlers-Danlos Syndrome Diagnosis
Diagnosis of Ehlers-Danlos Syndrome involves a combination of clinical assessment, family history, and genetic testing. Clinicians evaluate characteristic features such as joint hypermobility, skin elasticity, and tissue fragility, using standardized tools like the Beighton score for hypermobility. For certain subtypes, especially vascular Ehlers-Danlos Syndrome, molecular genetic testing is essential to confirm mutations in specific collagen-related genes (e.g., COL3A1). In cases where genetic tests are inconclusive, diagnosis relies on clinical criteria established by the 2017 International Classification of Ehlers-Danlos Syndrome. Due to overlapping symptoms with other conditions, early recognition by experienced specialists is crucial to ensure accurate diagnosis and management.
Further details related to diagnosis will be provided in the report..
Ehlers-Danlos Syndrome Treatment Landscape
Treatment for Ehlers-Danlos Syndrome is primarily supportive, as there are currently no FDA-approved therapies targeting the underlying genetic causes. This typically involves physical therapy to strengthen muscles and stabilize joints, along with pain management strategies tailored to the individual. Cardiovascular monitoring is essential, especially for patients with vascular Ehlers-Danlos Syndrome due to the risk of arterial rupture. Preventive measures such as avoiding high-impact activities and protecting fragile skin and tissues are also important. Genetic counseling is recommended for affected individuals and their families. Celiprolol, a ß1-blocker, is the only drug in late-stage development, being investigated for its potential to reduce life-threatening vascular events in vEhlers-Danlos Syndrome, though it is not yet approved by the FDA. Multidisciplinary care remains the cornerstone of effective management.
Further details related to treatment will be provided in the report...
Ehlers-Danlos Syndrome Epidemiology
The Ehlers-Danlos Syndrome epidemiology chapter in the report provides historical as well as forecasted epidemiology segmented by the total prevalent cases of Ehlers-Danlos Syndrome, diagnosed prevalent cases of Ehlers-Danlos Syndrome, and subtype-specific cases of Ehlers-Danlos Syndrome in the 7MM market covering the United States, EU4 (Germany, France, Italy, and Spain) and the United Kingdom, and Japan from 2020 to 2034.
Key Findings
- The most common forms are hEhlers-Danlos Syndrome, which affects between 1 in 10,000 and 1 in 15,000 people, and Ehlers-Danlos Syndrome classical type, which affects 1 per 10,000 to 1 per 20,000 people.
- Aside from the common subtypes, most others are exceedingly rare, with specific subtypes like Ehlers-Danlos Syndrome kyphoscoliotic type identified in about 60 total patients and Ehlers-Danlos Syndrome dysfibronectinemic type identified in only one single family.
- The prevalence for the vEhlers-Danlos Syndrome subtype was 42%, for unspecified Ehlers-Danlos Syndrome was 19%, and for hEhlers-Danlos Syndrome was 20%.
- Most Ehlers-Danlos Syndrome types are inherited in an autosomal dominant pattern, giving each child a 50% chance of inheriting the condition. While both sexes can carry the gene equally, women with hypermobile Ehlers-Danlos Syndrome often show more symptoms, making it appear more common in females.
Ehlers-Danlos Syndrome Epidemiology Segmentation:
- Total Prevalent Cases of Ehlers-Danlos Syndrome in the 7MM
- Diagnosed Prevalent Cases of Ehlers-Danlos Syndrome in the 7MM
- Subtype-specific Cases of Ehlers-Danlos Syndrome in the 7MM
Ehlers-Danlos Syndrome Drug Analysis
Ehlers-Danlos Syndrome Emerging Drugs
Ehlers-Danlos SyndromeIVO (celiprolol): Zevra Therapeutics
Celiprolol is a selective ß1-adrenergic receptor antagonist investigational for the treatment of vEhlers-Danlos Syndrome. Its mechanism of action is designed to reduce the mechanical stress on collagen fibers within the arterial wall through vascular dilation and smooth muscle relaxation.
Celiprolol has been granted Orphan Drug and Breakthrough Therapy designations by the US FDA. Zevra recently restarted enrollment in the DiSCOVER trial, a Phase III trial being conducted under a Special Protocol Assessment (SPA) agreement with the US FDA. Celiprolol is protected by intellectual property rights until 2038.
- In November 2023, Zevra Therapeutics announced the completion of its acquisition of Acer Therapeutics, which marks a significant step forward in executing Zevra’s strategy to become a leader in developing and commercializing treatments for rare diseases. Zevra has obtained access to Acer's rare disease assets OLPRUVA and Ehlers-Danlos SyndromeIVO.
Note: A Detailed therapy assessment will be provided in the final report...
Ehlers-Danlos Syndrome Drug Class Analysis
In the treatment of vEhlers-Danlos Syndrome, ß1-adrenergic receptor antagonists like celiprolol have emerged as a cornerstone therapy.
ß1-adrenergic receptor antagonist
ß1-adrenergic receptor antagonists play a critical role in reducing cardiovascular stress that can contribute to life-threatening complications. ß1 receptors are primarily located in the heart, where their activation increases heart rate and contractility, leading to elevated blood pressure. In individuals with vEhlers-Danlos Syndrome, where the blood vessels are unusually fragile due to defects in type III collagen, even normal cardiovascular forces can increase the risk of arterial dissection or rupture. By blocking ß1 receptors, drugs like celiprolol help lower heart rate and systolic blood pressure, thereby reducing the mechanical stress exerted on weakened vascular walls. This protective effect is key to minimizing vascular events and improving outcomes in patients with vEhlers-Danlos Syndrome.
Ehlers-Danlos Syndrome Market Outlook
Because the condition is genetic, there is no cure for Ehlers-Danlos Syndrome. Treatment focuses on managing symptoms, particularly by reducing stress on the aorta and other arteries, addressing skeletal and joint complications, and alleviating associated pain. The therapeutic landscape for Ehlers-Danlos Syndrome remains largely unmet, with no FDA-approved or globally marketed drugs specifically targeting the condition. Management is limited to supportive care, including blood pressure control, physical therapy, and cautious surgical intervention when needed. Celiprolol, a ß1-adrenergic receptor antagonist with partial ß2-agonist activity, is the only emerging pharmacological candidate showing potential, especially in reducing the risk of vascular events in vEhlers-Danlos Syndrome. It is currently in Phase III clinical development but remains unapproved by the FDA, with access largely restricted to certain European countries. The lack of approved therapies underscores a significant unmet medical need. Future progress will depend not only on advancing candidates like celiprolol but also on increased research investment to develop targeted treatments that address the underlying genetic and vascular mechanisms of Ehlers-Danlos Syndrome.
Further details will be provided in the report...
Ehlers-Danlos Syndrome Drugs Uptake
This section focuses on the uptake rate of potential drugs expected to be launched in the market during 2025–2034. The landscape of Ehlers-Danlos Syndrome treatment has experienced a profound transformation with the uptake of novel drugs.
Ehlers-Danlos Syndrome Pipeline Development Activities
The Ehlers-Danlos Syndrome pipeline report provides insights into different Ehlers-Danlos Syndrome clinical trials within late and early stages. It also analyzes key players involved in developing targeted therapeutics.
Pipeline Development Activities
The Ehlers-Danlos Syndrome clincial trials analysis report covers detailed information on collaborations, acquisitions and mergers, licensing, and patent details for Ehlers-Danlos Syndrome' emerging therapies.
KOL- Views
To keep up with current market trends, we take KOLs and SMEs' opinions working in the domain through primary research to fill the data gaps and validate our secondary research. Some of the leaders like MD, Professor and Vice Chair of the Department of Medicine and Director, PhD, and others. Their opinion helps to understand and validate current and emerging therapies and treatment patterns or Ehlers-Danlos Syndrome market trends. This will support the clients in potential upcoming novel treatments by identifying the overall scenario of the market and the unmet neEhlers-Danlos Syndrome.
Delveinsight’s analysts connected with 10+ KOLs to gather insights; however, interviews were conducted with 5+ KOLs in the 7MM. Centers such as the Washington University School of Medicine, University Medical Center Hamburg-Eppendorf, and University Graduate School of Medicine, etc. were contacted. Their opinion helps understand and validate Ehlers-Danlos Syndrome epidemiology and market trends.
Qualitative Analysis
- We perform qualitative and market intelligence analysis using various approaches, such as SWOT and Conjoint analysis. In the SWOT analysis, strengths, weaknesses, opportunities, and threats in terms of disease diagnosis, patient awareness, patient burden, competitive landscape, cost-effectiveness, and geographical accessibility of therapies are provided. These pointers are based on the Analyst’s discretion and assessment of the patient burden, cost analysis, and existing and evolving treatment landscape.
- Conjoint Analysis analyzes multiple approved and emerging therapies based on relevant attributes such as safety, efficacy, frequency of administration, designation, route of administration, and order of entry. Scoring is given based on these parameters to analyze the effectiveness of therapy.
- The analyst analyzes multiple emerging therapies based on relevant attributes such as safety, efficacy, frequency of administration, route of administration, and order of entry.
- In efficacy, the trial’s primary and secondary outcome measures are evaluated.
- Further, the therapies’ safety is evaluated, wherein the acceptability, tolerability, and adverse events are majorly observed, and it sets a clear understanding of the side effects posed by the drug in the trials.
Ehlers-Danlos Syndrome Market Access and Reimbursement
Reimbursement may be referred to as the negotiation of a price between a manufacturer and a payer that allows the manufacturer access to the market. It is provided to reduce the high costs and make the essential drugs affordable. Health technology assessment (HTA) plays an important role in reimbursement decision-making and recommending the use of a drug. These recommendations vary widely throughout the seven major markets, even for the same drug. In the US healthcare system, both Public and Private health insurance coverage are included. Also, Medicare and Medicaid are the largest government-funded programs in the US. The major healthcare programs, including Medicare, Medicaid, Health Insurance Program (CHIP), and the state and federal health insurance marketplaces, are overseen by the Centers for Medicare & Medicaid Services (CMS). Other than these, Pharmacy Benefit Managers (PBMs) and third-party organizations that provide services and educational programs to aid patients are also present.
The report further provides detailed insights on the country-wise accessibility and reimbursement scenarios, cost-effectiveness scenario of currently used therapies, programs making accessibility easier and out-of-pocket costs more affordable, insights on patients insured under federal or state government prescription drug programs, etc.
Further detailed analysis will be provided in the report...
Scope of the Ehlers-Danlos Syndrome Market Report
- The report covers a descriptive overview of Ehlers-Danlos Syndrome, explaining its causes, signs and symptoms, pathogenesis, and currently available therapies.
- Comprehensive insight has been provided into Ehlers-Danlos Syndrome epidemiology and treatment.
- Additionally, an all-inclusive account of the current therapies for Ehlers-Danlos Syndrome is provided, along with the assessment of new therapies, which will have an impact on the current treatment landscape.
- A detailed review of the Ehlers-Danlos Syndrome market, historical and forecasted, is included in the report, covering the 7MM drug outreach.
- The report provides an edge while developing business strategies, by understanding trends shaping and driving the 7MM Ehlers-Danlos Syndrome market.
Ehlers-Danlos Syndrome Market Report Insights
- Ehlers-Danlos Syndrome Patient Population
- Ehlers-Danlos Syndrome Therapeutic Approaches
- Ehlers-Danlos Syndrome Pipeline Analysis
- Ehlers-Danlos Syndrome Market Size and Trends
- Ehlers-Danlos Syndrome Market Opportunities
- Impact of Upcoming Therapies
Ehlers-Danlos Syndrome Market Report Key Strengths
- Ten-Year Forecast
- 7MM Coverage
- Ehlers-Danlos Syndrome Epidemiology Segmentation
- Key Cross Competition
- Highly Analyzed Market
- Ehlers-Danlos Syndrome Drugs Uptake
Ehlers-Danlos Syndrome Market Report Assessment
- Current Ehlers-Danlos Syndrome Treatment Practices
- Ehlers-Danlos Syndrome Unmet NeEhlers-Danlos Syndrome
- Analyst Views
- Ehlers-Danlos Syndrome Pipeline Product Profiles
- Ehlers-Danlos Syndrome Market Attractiveness
- Qualitative Analysis (SWOT and Conjoint Analysis)
- Ehlers-Danlos Syndrome Market Drivers
- Ehlers-Danlos Syndrome Market Barriers
FAQs
- What was the Ehlers-Danlos Syndrome market share (%) distribution in 2020, and what would it look like in 2034?
- What would be the Ehlers-Danlos Syndrome total market size, as well as market size by therapies across the 7MM during the study period (2020–2034)?
- What are the key findings about the market across the 7MM, and which country will have the largest Ehlers-Danlos Syndrome market size during the study period (2020–2034)?
- At what CAGR, the Ehlers-Danlos Syndrome market expected to grow at the 7MM level during the study period (2020–2034)?
- What would be the Ehlers-Danlos Syndrome market growth till 2034?
- What are the disease risks, burdens, and unmet neEhlers-Danlos Syndrome of Ehlers-Danlos Syndrome?
- What is the historical Ehlers-Danlos Syndrome patient pool in the United States, the EU4 (Germany, France, Italy, and Spain), and the UK, and Japan?
- What will be the growth opportunities across the 7MM concerning the patient population of Ehlers-Danlos Syndrome?
- Among the 7MM, which country would have the most prevalent cases of Ehlers-Danlos Syndrome?
- At what CAGR is the population expected to grow across the 7MM during the study period (2020–2034)?
- How many companies are developing therapies for the treatment of Ehlers-Danlos Syndrome?
- What are the key collaborations (industry–industry, industry-academia), mergers and acquisitions, and licensing activities related to Ehlers-Danlos Syndrome therapies?
- What are the recent novel therapies, targets, mechanisms of action, and technologies developed to overcome the limitations of existing therapies?
- What are the 7MM historical and forecasted market of Ehlers-Danlos Syndrome?
Reasons to buy Ehlers-Danlos Syndrome Market Forecast Report
- The report will help in developing business strategies by understanding trends shaping and driving the Ehlers-Danlos Syndrome market.
- To understand the future market competition in the Ehlers-Danlos Syndrome market and insightful review of the SWOT analysis of Ehlers-Danlos Syndrome.
- Organize sales and marketing efforts by identifying the best opportunities for Ehlers-Danlos Syndrome in the US, EU4 (Germany, France, Italy, and Spain), the United Kingdom, and Japan.
- Identification of strong upcoming players in the market will help in devising strategies that will help in getting ahead of competitors.
- To understand the future market competition in the Ehlers-Danlos Syndrome.

