Regulatory talks under way
The teams have already begun contacts with the FDA and EMA to prepare the clinical trial.
The Cockayne B Spain Association is a non-profit organisation created to promote research and accelerate the development of new therapies for Cockayne syndrome type B, an ultra-rare genetic disease.
We work to mobilise resources and build alliances between researchers, hospitals, foundations, companies and public administrations, connecting everyone who can help scientific advances travel the road from the laboratory to patients.
Our main initiative is El Camino de Carlota, an awareness and fundraising movement created to support the development of a gene therapy for Cockayne type B and to help the research projects already under way move towards a clinical phase.
The association was also born with a commitment to give visibility to Cockayne syndrome, defend the interests of those affected and support their families, building a community able to bring together knowledge, collaboration and resources.
The Cockayne B Spain Association is led by a Board of Directors made up of family members and professionals from different fields who contribute their experience altruistically to the development of the association.
Each member takes on specific responsibilities in areas such as strategy, research, institutional relations, financial management, communication and fundraising, with one common goal: to accelerate the development of therapies for Cockayne syndrome type B.
President
Carlota's father and co-founder of El Camino de Carlota. Responsible for coordination with research groups and for relations with public administrations, hospitals and research centres.
Background: Degree in Veterinary Medicine from the University of León. Veterinary surgeon and director at Centro Veterinario Selcán.
View LinkedIn profile
Vice President
Carlota's grandmother. Co-responsible for coordination with research groups and hospitals, taking part in the scientific and medical follow-up of the projects.
Background: Degree in Medicine from the Complutense University of Madrid.
View LinkedIn profile
Secretary
Responsible for the association's document, administrative and financial management, supporting the operation and development of its projects.
Background: Degree in Business Studies. Head of administration at Fire Control Protect System SL.
View LinkedIn profile
Treasurer
Carlota's mother and co-founder of El Camino de Carlota. Responsible for the association's treasury, communication and social media.
Background: Degree in Architecture from CEU San Pablo University. Consultant at GESVALT.
View LinkedIn profile
Board Member
Responsible for relations with companies and partner organisations, strategic advice and fundraising.
Background: Telecommunications Engineer from the Technical University of Madrid, with experience in strategy, innovation and digital transformation. CEO at Altamar Innoventures.
View LinkedIn profile
Board Member
Responsible for corporate relations, strategic advice and fundraising, helping to develop alliances and collaboration opportunities for the association.
Background: Degree in Law and Business Administration from CUNEF. Consultant at Boston Consulting Group (BCG).
View LinkedIn profile
Board Member
Responsible for the association's legal affairs and for legal and business advice, providing support on legal, contractual and third-party collaboration matters.
Background: Degree in Law from the University of Oviedo. Partner at Dentons.
View LinkedIn profileWould you like to collaborate with the association or learn more about our work? Write to us and we will reply personally.
ContactLegal name: Asociación Cockayne B España (ACBE)
Status: Association in the process of incorporation
Tax ID (NIF): G93884112 (provisional)
Registered address: C/ Monte Llosorio, 4 · 33600 Mieres (Asturias), España
Email: info@elcaminodecarlota.org
