Orfenix combines the symbolism of the phoenix, renewal, transformation, and the concept of an orphan drug, focus on rare diseases. It represents a company committed to innovative, responsible drug development, inspired by Orpheus’ healing and artistry.

At Orfenix, we transform existing compounds into new, affordable therapies.

Our subject matter experts collaborate with leading academics and partners to bring innovative treatments from the lab to the patient.

Each project brings together the best minds, ensuring we address every challenge with expertise and passion.

Our specialized, agile team stays cost-efficient and responsive, driving forward life-changing projects.

We believe in making treatments accessible to all, adhering to principles of social responsibility and equity.

Vincent van der Wel

Founder & Director

Ivo de Nooijer

Partner & Director

Meet the Orfenix team —driven by a passion for responsible, innovative treatments for rare diseases.

Hellen Houlleberghs

Clinical Development Director

Barbara van den Aarsen

Director of Clinical Operations
& Regulatory

Willemijn Heinen

Graduate Intern

2016
2016

Early beginnings

Frustrated by the limited patient access to many drugs, Vincent left medical school to pursue a master’s in health economics.


Ivo helps Vincent find his first drug repurposing project, one of the early initiatives of the Fair Medicine Foundation, which Vincent played a key role in founding.


[Schippers: farmaceutische industrie, maak je borst maar nat (nos.nl)]

2017
2017

Origins Patient One

Vincent is the driving force behind the creation of a broad consortium of both public and private partners that leads to the founding of Patient One.

2018
2018

Haltex Origins

The publication of a article on the impact of the discontinuation of Etidronate, and its impact on PXE patients, leads Vincent to reach out to the physician in question, this is the start of the Haltex project.


[https://www.volkskrant.nl/cs-b386f9d9/]

2019
2019

Medicijnen voor de Maatschappij

2019 Vincent joins forces with Prof. Carla Hollak of Amsterdam UMC (AUMC) and plays a key role in the inception and formation of the ‘Medicijnen voor de Maatschappij’ platform, in an effort to improve access to expensive drugs.


[Amsterdam UMC gaat meer dure medicijnen zelf maken | Trouw]


Ivo joins the team under the leadership of Prof. Frank Miedema that develops the 10 principles of Socially Responsible Licensing (SRL), a national framework to ensure equitable access to products based on results of publicly funded research


[https://www.nfu.nl/sites/default/files/2020-10/Tien_Principes_MVL.pdf]

2020
2020

Collaboration AUMC & Namuscla

In response to the excessive pricing of a muscle disease drug, Vincent collaborates with AUMC to provide patient access to mexiletine through pharmacy preparation.


[GVS-advies mexiletine (Namuscla®) bij de behandeling van non-dystrofische myotonie | Advies | Zorginstituut Nederland]

2021
2021

Orfenix Foundation & FAST Initiative

Vincents starts Orfenix to bring the various projects and initiatives together under a single brand.

2021
2021

Fast Affordable & Sustainable Therapies

Ivo and Vincent are part of the initial team that helps scoping the Dutch Future Affordable and Sustainable Therapies (FAST) initiative, aimed at improving access to medicine for Dutch patients.

2022
2022

Orphan Designation pyridoxal phosphate

Vincent is instrumental in the European Medicine Authority granting orphan designation to Medicijnen voor de Maatschappij for pyridoxal phosphate for the treatment of PNPO deficiency, a rare serious neurological disease.


[Medicijn voor de Maatschappij ontvangt weesgeneesmiddelstatus]

2022
2022

Technology Transfer License negotiation model

Vincent joins Ivo and other entrepreneurs, technology transfer professionals, and investors to develop the Technology Transfer License negotiation model for the application of SRL principles in licensing negotiations.


[FAST-Leidraad-Maatschappelijk-Verantwoord-Licentieren_def.pdf]

2023
2023

Ivo joins Orfenix

Ivo joins Orfenix to create synergies and expand Orfenix, the collaboration is turned into a partnership in the course of 2024.

2024
2024

GuanaRep as an AUMC Spin-out

Orfenix sets-up GuanaRep as an AUMC spin-out to for the product development of guanabenz, based on the groundbreaking research of Prof. Marjo van der Knaap, to combat Vanishing White Matter disease, a debilitating neurological disorder.


[GuanaRep BV – AMC Ventures Holding]

At Orfenix, we prioritize Collaboration, partnering with top academics, investors, and companies to bring innovative treatments from the lab to patients. By Repurposing existing compounds, we find new uses that address specific patient needs, while our commitment to Sustainable Development minimizes waste and reduces costs. We ensure Equitable Access through socially responsible licensing, and value Transparency and Trust in all operations, building strong relationships with patients and partners.

Do you want to make an impact on patients’ lives?

At Orfenix, you work with top professionals and collaborate with leading experts to bring forgotten treatments from the lab to patients.

If you’re passionate about transforming healthcare and thrive in a transparent, trust-driven environment, Orfenix is the place for you.

 

Vincent van der Wel

Vincent holds degrees in Medicine, Business Studies, and Health Economics. This mix gives Vincent a good understanding of the clinical impact of treatments on clinicians and patients and the economic impact of drug development on payers, shareholders, and investors. 

As the founder of Orfenix, Vincent has contributed to the incorporation and funding of three public-private partnerships currently developing treatments for rare diseases. Additionally, Vincent has supported over 15 projects advancing drug development within the academic community.

Vincent works closely with academic initiatives to advance academic drug development, such as the platform Medicine for Society and the national hub for drug repurposing and rare disease Rare-NL.

Vincent actively contributes to scientific research on public-private partnerships, developing orphan medicine and pricing. At the Amsterdam UMC, he supports PhD students in executing drug development projects and their research. 

Vincent holds several certificates in regulatory affairs and clinical development. He has hands-on experience with regulatory interactions at national and European levels. Vincent has obtained orphan designations and worked on multiple scientific advice and protocol assistance procedures. 

Ivo de Nooijer

Ivo has a biopharmaceutical sciences, Dutch law, and medical history degree. He is completing his PhD thesis, which investigates negotiations in early-stage licensing in the Netherlands' life sciences and health sector.

Ivo has worked in an international commercial setting, within Unilever, and as a lawyer in private practice in Amsterdam, focused on intellectual property and commercial contracts, both in the context of litigation and transactions.

Ivo has an extensive network in the Netherlands university technology transfer sector. He headed up the Leiden tech transfer office and worked in Utrecht and Rotterdam in a similar role. In addition, he advised companies and charities engaged in early-stage development in the life sciences and health sector.

Ivo was one of the drivers in creating and evolving the Socially Responsible licensing principles from 2019 and the subsequently developed tools and guidelines.

Ivo developed the Biotech Booster on behalf of several companies and the collective universities and academic medical centres, as well as advising the collective universities and academic medical centres on a wide array of university technology transfer-related issues and challenges.

Hellen Houlleberghs

Hellen has an international academic background with a BSc in Medical Biochemistry from King's College, University of London, an MSc in Biomedical Sciences and Management from the University of Leiden, and a PhD in oncology from the Netherlands Cancer Institute.

Hellen has worked on primary as well as applied research, with a PhD that focused on the development and diagnostic use of a genetic screen for the identification of subjects at risk of developing hereditary colorectal cancer.

Hellen has nearly a decade of experience in clinical operations, working on both the industry's Sponsor and Clinical Research Organization sides.

Hellen has managed global phase I to III trials in various indications, including rare diseases, for small and large pharmaceutical companies.

Hellen is a proactive, creative problem solver and enthusiastic, collaborative, methodological clinical operations professional who is driven to achieve the best possible result.

Barbara van den Aarsen

Barbara has studied Biochemistry and obtained her Master's degree at Leiden University.

Barbara started her career in a niche CRO focusing on large cardiovascular clinical trials, where she held several roles, including CRA, CRM, and Project Manager.

After 10 years, Barbara switched to managing multidisciplinary teams that executed small, complex clinical trials in Rare Diseases, both at Sponsors and CROs.

Barbara has experience managing several central (imaging) labs, setting up eCRFs, submitting scientific advice requests, writing medical documents for CSR and safety documentation, and conducting Statistical Analysis and DSMB activities.

Besides Project Management, Barbara has always been interested in Line Management in the biopharmaceutical industry and has acted as a Line Manager, coach for newcomers, and confidential counselor.