World Lipodystrophy Day: call to action from European experts on this ultra-rare disease
Amryt Pharma joins its voice to that of doctors and patient associations across Europe in calling for greater awareness of lipodystrophies.
In a recent report, Lipodystrophy: A Rare Challenge, leading lipodystrophy experts from seven European countries, as well as all patient associations active in Europe, unanimously concluded that a better understanding of the disease is essential to improve patients' lives.
The report Lipodystrophy: A Rare Challenge aims to drive positive change for people with partial or generalised lipodystrophy across Europe. With the collaboration of seven leading European health professionals specializing in lipodystrophy and four European patient associations, the report provides a series of recommendations to improve patient care.
The recommendations include specific actions in four main areas:
Increase knowledge of the disease among the professionals most likely to care for patients with lipodystrophy: diabetologists, gynaecologists, endocrinologists, internists, cardiologists, paediatricians and nurses
Underline the importance of early referral to a centre of reference
Taking into account the needs of patients in a broad sense
Promote recognition that medical innovations in the field of ultra-rare diseases are of greater value
About the report
In order to prepare this report, in-depth discussions were held with the following specialist doctors and patient support organisations throughout Europe:
David Araújo, Spain
Giovanni Ceccarini, Italy
Paula Freitas, Portugal
Ingrid Jazet, Netherlands
Vaia Lambadiari, Greece
Ann Mertens, Belgium
Dr. Annette Richter-Unruh, Germany
International Association of Relatives and People Affected by Lipodystrophy (AELIP), Spain
French Association of Lipodystrophy (AFLIP), France
Italian Association of Lipodystrophy (AILIP), Italy
Lipodystrophy UK (LDUK), United Kingdom
The president of AELIP wanted to emphasize the importance of disseminating this document which she hopes will be very well received at an international level since it is available in Spanish as well as in English and Portuguese.
The report can be consulted and downloaded through the following internet addresses:
AELIP's web page http://www.aelip.es/son-lipodistrofias.asp
or at www.lipodystrophy.eu/es
