BioPontis Alliance for Rare Diseases Established in Brussels, Belgium

Unique Foundation addresses lack of therapies for rare diseases affecting brain and nervous system

RALEIGH, N.C. & BRUSSELS--()--The Board of Directors of BioPontis Alliance for Rare Diseases (‘BioPontis’), today announced the establishment of a Foundation of Public Utility (fup/son) in Brussels, Belgium for its European activities. BioPontis also announces the appointment of two new European board members, Jean-Jacques Cassiman of Belgium and Christian Policard of France. These announcements reflect the international mission of BioPontis to develop new treatments for rare diseases with leadership representing top scientific, regulatory and patient advocacy expertise.

”Pan-European and member states governments have taken active steps to create policies and foster access to therapies for rare diseases,” comments Erik Tambuyzer, co-Founder and Chair of the Board. “BioPontis intends to be an important developer of new therapies and is committed to reaching out to the rare disease patient communities because we believe that they must be integral to development programs.” Tambuyzer has been at the forefront of the European and international health policy scene for rare diseases for 20 years, working as Senior Vice-President for Genzyme, founder and Chair of the European industry task force for rare diseases and orphan drugs, and as a co-founder of organizations such as EPPOSI, and of the Fund for Rare Diseases and Orphan Drugs at the King Baudouin Foundation in Belgium.

Despite the progress in our understanding of genetics and human biology over the last 25 years, over 95% of 7-8000 rare diseases have no treatment of any kind today leaving over 300 million people worldwide in need. While awareness of these rare patients is rising, so is the understanding that non-commercial (philanthropic) support combined with expertise in therapeutic product development is required to conduct the early stages of developing new medicines.

“There is a serious gap in the conduct of the early, risky work to translate an idea into an actual medicinal compound that meets the safety and benefit requirements to be tried in patients. BioPontis Alliance is a way to bridge (pons, pontis = bridge) that gap. We are reaching out to our friends and colleagues throughout Europe who seek high impact contribution opportunities,” says Christian Policard, regarding his reasons for joining BioPontis. “We can truly change the future for these patients.” Policard is Senior Partner of Biotech Développement Conseils, a Paris based strategic consulting firm. He has previously served as Executive Vice President at Sanofi-Synthelabo and as Member of the Sanofi Executive committee, and as Executive Vice President worldwide business development and industrial alliances of Institut Pasteur.

“Patients suffering from rare disease are encouraged that governments and the public have become aware of their problems, but an effective treatment is really what they need most.” comments human geneticist Jean-Jacques Cassiman. “BioPontis is focusing initially on rare diseases that affect the brain and nervous system because about half of rare diseases known today are in this category. Neurogenetics research is revealing critical insights into these life- limiting conditions”, he continues.

Cassiman brings a career commitment to patients with rare diseases as a pediatric geneticist, researcher and advocate for the welfare of children and adults living with the burden of these disorders. He is emeritus Professor KU Leuven and Chair of the Fund for Rare Diseases and Orphan Drugs of the King Baudouin Foundation, and a member of the Rare Disease Patient and Ethics Council (RD-PEC). Cassiman was Secretary-General of the European Society for Human Genetics.

About BioPontis Alliance for Rare Diseases

BioPontis Alliance for Rare Diseases is a 501c(3) public charity in the US (North Carolina) and a foundation of public utility in Belgium (Brussels). Managed by an international Board and executive team, BioPontis partners with patients’ organizations and clinical researchers to bridge the gap, from promising science to medicines. BioPontis Alliance for Rare Diseases is being established as a global non-profit, inviting corporate, private and foundation philanthropic support. Contributions to support our programs and mission can be made at http://.biopontisalliance.org.

Contacts

BioPontis Alliance for Rare Diseases
Erik Tambuyzer, Chair
+32 475 615711 (Brussels, BE)
erik.tambuyzer@biopontisalliance.org
or
Barbara Handelin, CEO
610-651-7847 (Philadelphia, US)
barbara.handelin@biopontisalliance.org

Contacts

BioPontis Alliance for Rare Diseases
Erik Tambuyzer, Chair
+32 475 615711 (Brussels, BE)
erik.tambuyzer@biopontisalliance.org
or
Barbara Handelin, CEO
610-651-7847 (Philadelphia, US)
barbara.handelin@biopontisalliance.org