Birthe Byskov Holm

Birthe Byskov Holm

 

Rare Diseases Denmark, Denmark
Rare Disorders Denmark

e-mail: bbh@sjaeldnediagnoser.dk

www.sjaeldnediagnoser.dk

Birthe Byskov Holm joined the EURORDIS Board of Directors in 2012.

She has a long history of active participation in patient organisations. She became involved in the field of rare diseases because her son was born with the rare disorder Osteogenesis Imperfecta.

Birthe has been a member of the Danish Osteogenesis Imperfecta Association since 1983 where she has acted as President and Vice-President and she is also a co-founder and currently President of the Danish rare disease alliance (Rare Disorders Denmark).

Birthe was a EURORDIS nominated patient representative at the Committee of Orphan Medicinal Products (COMP) of the European Medicines Agency (EMA) where she held the position of vice-chair until 2012.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases