LAND Initiatives

LAND INITIATIVES

Support families  

  • Link affected families with a medical center to receive needed care and advice
  • Raise awareness about early genetic diagnosis in both families and future generation
  • Regularly communicate with families and organize get together fun days
  • Support social integration of affected children
  • Empower children to live a normal life until a cure is found
  • Share most updated multidisciplinary medical approaches to improve quality of life
  • Share recent studies and findings on Neuro-Muscular diseases
  • Provide medical equipments such as electrical wheelchairs, lifters, breathing/coughing machines
  • Translate and distribute latest medical guidance booklets to affected families

 Awareness Raising

  • Media outreach with TV & radio stations and social media
  • Lobbying with government, including Ministry of Social Affairs and Ministry of Health
  • Linkages with regional health care centres in the South and North of the country to reach affected families in remote areas
  • Organising yearly Telethons with the French community in Lebanon in support of the Association française contre les myopthies (AFM) which focuses on genetic research to find a cure.
  • Highlight rare disease day and world Duchene awareness day
  • Screening of documentaries and movies

Fundraising through

  • Personal contributions
  • Fundraising events

Collaboration with local and international organisations 

  • Treat- Neuro-Muscular Disease (Treat-NMD)
  • Parents Project Muscular Distrophy meetings (UPPMD)
  • World Duchenne Organization (WDO)
  • Eurordis and AFM (L’Association française contre les myopathies)
  • Sesobel & Tamana

 

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