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Phenylketonuria

Rare Diseases
3
Pipeline Programs
11
Companies
37
Clinical Trials
3 recruiting
0
Approved Products

Pipeline by Development Stage

Preclinical
Phase 1
Phase 1/2
Phase 2
Phase 2/3
Phase 3
On Market
0
1
1
0
0
1
0
Early DiscoveryClinical DevelopmentMarket

Drug Modality Breakdown

RNA Therapeutic
1100%
+ 36 programs with unclassified modality

Rare Diseases is a $21.9B market dominated by a single blockbuster (ELIQUIS), with moderate growth and high consolidation among top-tier pharma players.

$21.9B marketMature→ Stable30 products15 companies

Key Trends

  • Market concentration: One product (ELIQUIS) represents 83% of market spending
  • Complement inhibitors and enzyme replacement therapies gaining momentum
  • Active pipeline with 1,790 trials, predominantly Phase 2-3 stage

Career Verdict

Yes, if you seek stability and commercial opportunity with major pharma; proceed cautiously if you want pipeline upside or innovation-driven roles.

AI-generated market analysis based on FDA, CMS, ClinicalTrials.gov, and hiring data

Market Leaders

#1ELIQUISStable
$18.3B
Bristol Myers Squibb·LAUNCH15.0yr
#2XIFAXANDeclining
$1.1B
Bausch Health·LOE_APPROACHING
#3BRILINTAStable
$692M
AstraZeneca·PEAK10.2yr
#4TYVASO DPIStable
$437M
#5STRENSIQStable
$259M

Drug Class Breakdown

FXa Inhibitors (Anticoagulants)
$18.3B(83%)

Mature, patent-protected until 2041

Unknown Mechanism
$1.4B(6%)

Mixed—includes LOE-approaching products

P2Y12 Receptor Antagonists
$692M(3%)

Peak sales, LOE 2036

Prostaglandins/Vasodilators
$437M(2%)

Stable, long patent protection

Complement Inhibitors
$408M(2%)

Emerging class, no LOE data available

Enzyme Replacement Therapies
$40M(0%)

Niche market, specialized patient populations

Career Outlook

Stable

The rare disease market is stable but mature, with job growth concentrated in commercial and medical affairs rather than R&D innovation. Consolidation among top pharma (AstraZeneca, BMS, Amgen) limits opportunities for mid-tier companies, but specialist biotech firms show hiring momentum. Patent cliff risk for ELIQUIS (2041) will create restructuring opportunities and potential job flux in downstream years.

Breaking In

Target commercial or quality assurance roles at AstraZeneca, Capricor, or Amgen to build market knowledge; rare disease expertise is portable and valued across therapeutic areas.

For Experienced Professionals

Seek regulatory or medical affairs leadership roles where salary ceiling is highest ($243K-$257K); consider biotech firms like Insmed or Krystal for upside if pipeline approvals accelerate.

In-Demand Skills

Market access and HCP engagement (medical affairs)Regulatory and compliance expertisePatient stratification and genetic testing knowledgeCommercial analytics and lifecycle management

Best For

Medical Science Liaison (high salary, growing demand)Commercial Manager/Product Manager (39% of jobs)Regulatory Affairs Specialist (premium salary $257K)Health Economics & Outcomes Research (unmet need in data)

Hiring Landscape

$114K-$257K

Rare disease hiring is concentrated in commercial roles (75 jobs at $215K avg) and medical affairs (16 jobs at $243K avg), reflecting a mature market's focus on market access and HCP engagement. Top hiring companies include AstraZeneca (38 jobs) and emerging biotech players like Capricor Therapeutics (30 jobs). Department salaries range from $114K-$257K, with regulatory affairs commanding premium compensation.

195
Open Roles
5
Companies Hiring
5
Departments

Top Hiring Companies

38Growing
18Stable
17Growing
14Stable

By Department

Commercial(39%)
$215K
Medical Affairs(8%)
$243K
Research & Development(10%)
Regulatory Affairs(4%)
$257K
Quality Assurance(4%)
$168K

Commercial and regulatory roles offer strong salaries and growth; R&D hiring is minimal (10%), reflecting a consolidation and maturity phase in the market.

Competitive Landscape

10 companies ranked by most advanced pipeline stage

Otsuka
OtsukaJapan - Tokushima
2 programs
1
1
JNT-517 TabletPhase 31 trial
JNT-517 SuspensionPhase 1/21 trial
Active Trials
NCT05781399Active Not Recruiting135Est. Dec 2025
NCT06971731Recruiting120Est. Apr 2028
Agios Pharmaceuticals
Agios PharmaceuticalsMA - Cambridge
1 program
1
AG-181Phase 11 trial
Active Trials
NCT07241234Recruiting20Est. Jan 2028
BioMarin Pharmaceutical
25 programs
Administration of CANTAB and Subject Global AssessmentN/A1 trial
Biological Variation of Phenylalanine in Patients With HyperphenylalaninemiaN/A1 trial
KuvanN/A1 trial
KuvanN/A1 trial
KuvanTM TherapyN/A1 trial
+20 more programs
Active Trials
NCT02468570Completed9Est. Feb 2017
NCT01869972Completed32Est. Dec 2015
NCT00827762Terminated2Est. Jan 2010
+22 more trials
PTC Therapeutics
3 programs
PTC923PHASE_31 trial
PTC923PHASE_31 trial
SepiapterinPHASE_31 trial
Active Trials
NCT05099640Completed157Est. May 2023
NCT05166161Active Not Recruiting200Est. Jun 2026
NCT06302348Recruiting56Est. Feb 2031
Oregon Therapeutics
Oregon TherapeuticsFrance - Paris
1 program
KuvanN/A
Rare Disease Therapeutics
1 program
Protein intakeN/A1 trial
Active Trials
NCT01965691Completed4Est. Dec 2015
UNION therapeutics
UNION therapeuticsDenmark - Hellerup
1 program
high oleic sunflower oilN/A1 trial
Active Trials
NCT00909012Completed114Est. Mar 2013
Sanofi
SanofiPARIS, France
1 program
SAR444836PHASE_1_21 trial
Active Trials
NCT05972629Active Not Recruiting32Est. Apr 2030
Moderna
ModernaCAMBRIDGE, MA
1 program
mRNA-3210PHASE_1_2RNA Therapeutic1 trial
Active Trials
NCT06147856Withdrawn0Est. Aug 2027
Merck & Co.
Merck & Co.RAHWAY, NJ
1 program
Kuvan®PHASE_42 trials
Active Trials
NCT01732471Completed90Est. Oct 2013
NCT01082328Completed59Est. May 2012

Trial Timeline

Clinical trial activity over time

2021
2022
2023
2024
2025
2026
2027
2028
2029
2030
2031
BioMarin PharmaceuticalRDD to Palynziq
BioMarin Pharmaceuticalsaproterin dihydrochloride
BioMarin PharmaceuticalKuvan®
Merck & Co.Kuvan®
OtsukaJNT-517 Tablet
PTC TherapeuticsSepiapterin
PTC TherapeuticsPTC923
PTC TherapeuticsPTC923
BioMarin PharmaceuticalBMN 165
Merck & Co.Kuvan®
BioMarin PharmaceuticalKuvan®
BioMarin PharmaceuticalSapropterin dihydrochloride
BioMarin Pharmaceuticalsapropterin dihydrochloride
BioMarin Pharmaceuticalsapropterin dihydrochloride
BioMarin PharmaceuticalSapropterin

Showing 15 of 36 trials with date data

Clinical Trials (37)

Total enrollment: 4,081 patients across 37 trials

Rapid Drug Desensitization Study in Adults Experiencing Hypersensitivity Reactions to Palynziq

Start: Feb 2025Est. completion: Aug 20269 patients
Phase 4Active Not Recruiting
NCT02677870BioMarin Pharmaceuticalsaproterin dihydrochloride

The Effectiveness of Kuvan in Amish PKU Patients

Start: Jan 2018Est. completion: Jan 20197 patients
Phase 4Completed

Kuvan®'s Effect on the Cognition of Children With Phenylketonuria

Start: Oct 2013Est. completion: Jan 202334 patients
Phase 4Completed

Response to Kuvan® in Subjects With Phenylketonuria (PKU) in a 4 Weeks Testing Period

Start: May 2010Est. completion: May 201259 patients
Phase 4Completed
NCT06971731OtsukaJNT-517 Tablet

A Study of JNT-517 in Participants With Phenylketonuria (PKU)

Start: Oct 2025Est. completion: Apr 2028120 patients
Phase 3Recruiting

A Study of Sepiapterin in Participants With Phenylketonuria (PKU)

Start: Mar 2024Est. completion: Feb 203156 patients
Phase 3Recruiting

A Long-Term Safety Study of PTC923 in Participants With Phenylketonuria

Start: Feb 2022Est. completion: Jun 2026200 patients
Phase 3Active Not Recruiting

A Study of PTC923 in Participants With Phenylketonuria

Start: Sep 2021Est. completion: May 2023157 patients
Phase 3Completed

An Open-Label Phase 3 Study of BMN 165 for Adults With PKU Not Previously Treated w/ BMN 165

Start: May 2013Est. completion: Nov 2015261 patients
Phase 3Completed

Phase 3 Open-label Study to Evaluate the Response and Safety of Kuvan® in Subjects With Phenylketonuria

Start: Nov 2012Est. completion: Oct 201390 patients
Phase 3Completed

Kuvan® in Phenylketonuria Patients Less Than 4 Years Old

Start: Jun 2011Est. completion: Feb 201756 patients
Phase 3Completed
NCT01114737BioMarin PharmaceuticalSapropterin dihydrochloride

Safety and Therapeutic Effects of Sapropterin Dihydrochloride on Neuropsychiatric Symptoms in Phenylketonuria (PKU) Patients

Start: Aug 2010Est. completion: Mar 2013206 patients
Phase 3Completed
NCT00838435BioMarin Pharmaceuticalsapropterin dihydrochloride

Effect of Kuvan on Neurocognitive Function, Blood Phenylalanine Level, Safety, and Pharmacokinetics in Children With PKU

Start: Feb 2009Est. completion: Sep 201895 patients
Phase 3Completed
NCT00332189BioMarin Pharmaceuticalsapropterin dihydrochloride

Study of Phenoptin in Subjects With Phenylketonuria Who Participated in Protocols PKU-004 or PKU-006

Start: Jul 2006Est. completion: Aug 2009111 patients
Phase 3Completed

Sapropterin on Cognitive Abilities in Young Adults With Phenylketonuria

Start: Feb 2014Est. completion: Nov 20142 patients
Phase 2Terminated

A Study to Evaluate Subcutaneously Administered rAvPAL-PEG in Patients With Phenylketonuria for 24 Weeks

Start: May 2012Est. completion: Jul 201524 patients
Phase 2Completed

Safety, Tolerability, and Efficacy Study of rAvPAL-PEG Administered Daily in Subjects With Phenylketonuria (PKU)

Start: Mar 2011Est. completion: Apr 201516 patients
Phase 2Completed

Long-Term Extension of Previous rAvPAL-PEG Protocols in Subjects With PKU (PAL-003)

Start: Jan 2010Est. completion: Jan 201968 patients
Phase 2Completed

Dose-Finding Study to Evaluate the Safety, Efficacy, & Tolerability of Multiple Doses of rAvPAL-PEG in Subjects With PKU

Start: Sep 2009Est. completion: Jun 201540 patients
Phase 2Completed

A Dose-finding Study to Evaluate mRNA-3210 in Participants With Phenylketonuria

Start: Mar 2024Est. completion: Aug 20270
Phase 1/2Withdrawn

A Phase 1/Phase 2 Open-label Study to Evaluate the Safety, Tolerability, and Efficacy of a Single Intravenous Administration of SAR444836 in Adult Participants With Phenylketonuria

Start: Aug 2023Est. completion: Apr 203032 patients
Phase 1/2Active Not Recruiting
NCT05781399OtsukaJNT-517 Suspension

First-in-Human, Multiple Part Clinical Study of JNT-517 in Healthy Participants and in Participants With Phenylketonuria

Start: Oct 2022Est. completion: Dec 2025135 patients
Phase 1/2Active Not Recruiting

A Study to Evaluate Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of AG-181 in Subjects With Phenylketonuria

Start: Apr 2026Est. completion: Jan 202820 patients
Phase 1Recruiting
NCT00789568BioMarin Pharmaceuticalsapropterin dihydrochloride

A Phase 1 Study to Evaluate Effects of Sapropterin Dihydrochloride on QTc Intervals in Healthy Adult Subjects

Start: Oct 2008Est. completion: Oct 200956 patients
Phase 1Completed

Safety and Tolerability Study of rAvPAL-PEG to Treat Phenylketonuria

Start: May 2008Est. completion: Oct 200925 patients
Phase 1Completed
NCT00484991BioMarin PharmaceuticalSapropterin dihydrochloride

Sapropterin Expanded Access Program

N/AApproved For Marketing
NCT02468570BioMarin PharmaceuticalAdministration of CANTAB and Subject Global Assessment

A Phase 3 Substudy to Evaluate Executive Function in Adults With PKU Who Are Participating in the Phase 3 Study, 165-302

Start: Aug 2015Est. completion: Feb 20179 patients
N/ACompleted

Protein Requirements in Children With Phenylketonuria (PKU)

Start: Oct 2013Est. completion: Dec 20154 patients
N/ACompleted
NCT01924026BioMarin PharmaceuticalNeurocognitive Outcomes in Mild Hyperphenylalaninemia (MHP)MHP Study

Neurocognitive Outcomes in Mild Hyperphenylalaninemia (MHP)MHP Study

Start: Sep 2013Est. completion: Feb 201610 patients
N/ACompleted
NCT01869972BioMarin PharmaceuticalBiological Variation of Phenylalanine in Patients With Hyperphenylalaninemia

Biological Variation of Phenylalanine in Patients With Hyperphenylalaninemia

Start: May 2013Est. completion: Dec 201532 patients
N/ACompleted
NCT01274026BioMarin Pharmaceuticalsapropterin dihydrochloride

Evaluation of Behavior, Executive Function, Neurotransmitter Function and Genomic Expression Kuvan Nonresponders

Start: Jan 2011Est. completion: Dec 201321 patients
N/ACompleted

The Effects of Kuvan on Functional Brain Connectivity in Individuals With Phenylketonuria (PKU)

Start: Aug 2009Est. completion: Aug 201120 patients
N/ACompleted
NCT00909012UNION therapeuticshigh oleic sunflower oil

Quantitative Requirements of Docosahexaenoic Acid for Neural Function in Children With Phenylketonuria

Start: May 2009Est. completion: Mar 2013114 patients
N/ACompleted

Behavioral Effects of Kuvan in Children With Mild Phenylketonuria

Start: Jan 2009Est. completion: Jan 20102 patients
N/ATerminated

Nutritional and Neurotransmitter Changes in PKU Subjects on BH4

Start: Oct 2008Est. completion: Oct 201058 patients
N/ACompleted

PKUDOS: Phenylketonuria (PKU) Demographic, Outcomes, and Safety Registry

Start: Sep 2008Est. completion: Jan 20211,887 patients
N/ACompleted

Sapropterin in Individuals With Phenylketonuria

Start: Jul 2008Est. completion: May 201845 patients
N/ACompleted

Related Jobs in Rare Diseases

Phase Legend

PreclinicalLab & animal studies
Phase 1Safety & dosing
Phase 2Efficacy testing
Phase 3Large-scale trials
On MarketApproved & available

Key Insights

1 late-stage (Phase 3) programs, potential near-term approvals
3 actively recruiting trials targeting 4,081 patients
11 companies competing in this space

The information on this page is for informational purposes only and should not be used as a substitute for professional medical advice. Drug information is sourced from FDA, DailyMed, and other government databases. Adverse event data from FAERS does not establish causation. Always consult a healthcare professional for medical decisions.