Stichting Effectief Voorschrijven Buiten Indicatie (Foundation for effective off-label prescription)
Stichting Effectief Voorschrijven Buiten Indicatie (Foundation for effective off-label prescription)

About

About SEVBI

SEVBI, a nonprofit organisation, creates an enabling basis for off-label prescription treatment options for patients with neuromuscular and neurological diseases – such as amyotrophic lateral sclerosis (ALS) - based on sound scientific and medical information. All within the guidelines for off-label prescribing, and in collaboration with patients, patient advocates, physicians, pharmacologists, pharmacists, legal experts and relevant governance boards.

SEVBI board

Marc ter Haar
Marc ter Haar, MSc  
  • President and co-founder of SEVBI.
  • Principally inspired by his friend Weert Jan Weerts who suffered from ALS (December 2013), Marc is deeply motivated to wipe this devastating disease off the face of the earth. For this mission, he relentlessly puts his impressive peoples network and skillset at work in the trenches.
  • Former President and co-founder of Stichting Amsterdam City Swim: 
    • A nonprofit organisation set up to raise awareness and funds for finding a cure to ALS.
  • Strategic Growth Markets leader at EY.
  • Linkedin profile
Jent Zijlstra
Jent Zijlstra, PharmD, MBA
  • Treasurer and co-founder of SEVBI; pharmaceutical and patient advocacy advisor.
  • Since his wife and two of his three daughters were diagnosis with myotonic dystrophy in 2006, Jent and his family have been confronted with a severely debilitating and progressive muscular disease, without a cure or specific treatment. At SEVBI, his passionate character and fully patient-focused attention safeguard the team to maintain an absolute focus on what is the one and only ultimate goal: helping the patients in need.
  • Founder and CEO of Verpakapotheek BV:
    • Verpakapotheek is a privately owned, independent packaging firm. It is specialised in individualised packaging (person, date and time) of oral drugs. In this way we contribute to lowering the cost of care and increase the quality of life.
  • Linkedin profile
Pieter Gaillard
Pieter Gaillard, PhD
  • Secretary and co-founder of SEVBI; scientific advisor.
  • Ever since his good friend almost died of a major stroke in 1992, Pieter wakes up to give his 100% to create better treatment options for devastating brain and eye diseases. 
And he created technologies and has been developing products that are fighting brain cancer, MS, ALS and blindness ever since. For this mission at SEVBI, he contributes his extensive neuro-pharmaceutical development knowledge and active link to his global support network of neurology-focused professionals from academia, medical centers, foundations and corporations.
  • Board member:
    • Supervisory Board member of Leiden Marketing 
    • Member of the Advisory Board of Leiden Bio Science Park
    • Member of the Board and co-founder of BBBNedwork Foundation
    • Member of the Expert Board of Skolkovo Foundation
    • Member of the Expert Panel of Carduso Capital
  • Life sciences entrepreneur:
    • Co-founder and CEO of 2-BBB Medicines BV (restart of to-BBB) and to-BBB Taiwan Ltd.
    • Co-founder and CEO of EnhanX Biopharm Inc.
    • Founder and CEO of Eyesiu Medicines BV
    • Co-founder and chairman of the Supervisory Board of Mireca Medicines GmbH
  • Linkedin profile   

SEVBI advisors

Eize Wielinga
Eize Wielinga, MD, PhD
  • Medical advisor to SEVBI.
  • Having been repeatedly exposed to the deep suffering of ALS patients in his medical advisory role at Amsterdam City Swim, as well as in his clinical practice as ENT physician (related to speech and swallowing problems) and as SCEN (Support and Consultation for Euthanasia in the Netherlands) physician at the end stage of the disease, Eize is committed to help patients with this devastating disease with all of his might. For this mission, he acts without fear, full of charm and humor, and stops at nothing, all conducted within the standards and frameworks of his medical profession.
  • Public functioning:  
    • Medical advisor to Stichting Amsterdam City Swim.
    • Author of book: "Hoe overleef je de dokter" (how do I survive my physician).
    • TV-doctor at "Missers", and Radio-doctor at BNR. 
  • Ear, Nose and Throat (KNO) and SCEN physician:
    • KliniekOudZuid Amsterdam.
    • Alrijne Ziekenhuis Leiderdorp.
  • Linkedin profile
Bert Tuk
Bert Tuk, PhD
  • Scientific advisor to SEVBI.
  • With an academic background on the clinical pharmacology of CNS drugs, and subsequent serving on a multitude of client projects on neurological diseases, Bert developed the groundbreaking new insight that it is actually the body-own inhibitory system that causes the inhibition of function in patients with neurological and neuromuscular diseases. He further discovered the prior treatment success in ALS patients of a safe and effective treatment regimen with known drugs that restore the function of the inhibitory system, aiming at the reversal of symptoms in ALS. The observed reversal of symptoms is seen as a challenge to the current scientific dogmas in neurology that assume that the paralysed muscles result from neuronal cell death and therefore cannot be reversed. SEVBI was created around the observation that available off-label treatments with a favourable benefit and risk ratio were not used in clinical practice, not even in ALS. Bert is facilitating the enablement of fast and affordable access to the treatments with high moral and patient values.
  • Founder of Ry Pharma BV:
    • A company that holds the patents on the groundbreaking inventions in order to secure and enable the treatments to be developed for patients in need at the fastest and most affordable ways.
  • Tuk Consultancy Interim Management 
    • Consultant and interim manager with a track record in line management, project management, reorganization projects, business development, start-up management, the management of spin-out processes, financial and legal integration projects, strategic marketing evaluations, pricing evaluations, the financial valuation of companies and projects, mergers & acquisitions, drug development, clinical trial design, pharmaco-economic analysis and pricing & reimbursement.
  • Linkedin profile   
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