ALD Connect, a co-operative network for adrenoleukodystrophy



Written on Friday 6 June 2014

Arising from Dr. Florian Eichler’s initiative (Massachussetts General Hospital, Boston, MA, USA), ALD Connect is a co-operative network for adrenoleukodystrophy (ALD). It brings together scientific experts, doctors, patient associations and pharmaceutical laboratories.

Founded in January 2013, its mission is to improve patient care and health by promoting scientific knowledge and raising awareness/educating health professionals and the public at large. Inspired by the NEALS consortium, which is dedicated to amyotrophic lateral sclerosis, its aim is to eradicate adrenoleukodystrophy. The collaboration between the partners is based on a spirit of transparency and openness and is organized with a democratic mode of governance. Currently, ALD Connect brings together medical centres in North America and in the future it will expand to become international.

 

On the 17th and 18th of June, the 2nd  ALD Connect meeting gathered together thirty seven people in Boston (USA), including ELA representatives. Different subjects were broached on this occasion: Logo_ALD_Connect

  • Pathophysiology of the illness
  • Measurement of illness progression
  • Data collection
  • Diffusion of information
  • Funding of the network
  • Perspectives of the patients
  • Collaboration with industry
  • Future scientific and therapeutic initiatives

This working meeting allowed the group to lay the foundations of future collaborations within the network. Four working groups were defined:

  1. Infrastructure, Governance and Funding
  2. Evaluation parameters for ALD
  3. Pathological mechanisms of ALD
  4. Diffusion of medical information about ALD

ALDConnect_meeting_2013

To learn more : www.aldconnect.org