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AISED ONLUS (Associazione Italiana Sindrome Ehlers-Danlos Onlus)

Milano, Italy

+39-33-8811-1739 https://www.aised.it https://www.instagram.com/aisedonlus

About this Group

AISED is a non-profit association founded in 2009 with the purpose of listening to and supporting people affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in their journey to knowledge and acceptance of the disease.

• Provides pieces of information about social benefits and rights
• Provides support for healthcare practices
• Raises awareness and knowledge about the Ehlers-Danlos syndromes and the hypermobility spectrum disorders
• Is a reference for all of those who need help and comfort
• Guides patients to resources for the management of disorders
• Works with other rare disease associations to promote an inclusive culture of invisible and rare diseases
• Works to build a specialists network for whom people can refer

Until 2018 the association has contributed to support Milano’s Policlinico Hospital, raising money for the genetics laboratory and training a physiotherapist specializing in treatments for EDS. Beyond supporting research and training initiatives, AISED is committed to building a community that brings together people affected by EDS and HSD, giving hope to all of those who are struggling against these disorders.

  • Charity Organization
  • Support Group
  • Affiliate
  • This group holds in-person meetings
  • This group holds virtual meetings

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