Project Description

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What is Rett Syndrome?

Rett syndrome is a rare, severe neurological disorder that affects mostly girls.The syndrome is estimated to appear in one out of every 10,000 female births. Infants with Rett syndrome develop normally for the first 6 to 18 months, after which the first signs appear. Their condition deteriorates until the girls, many of whom live into adulthood, are completely dependent on a caregiver.

Symptoms of Rett syndrome:

  • Slowed growth – The brain doesn’t grow properly, and the head is usually small
  • Problems with hand movements – Most children with Rett syndrome lose the use of their hands
  • No language skills – Between ages 1 to 4, social and language skills start to decline
  • Social anxiety – They may stay away from or not be interested in other people, toys, and their surroundings
  • Problems with muscles and coordination – This can make walking awkward, and many become wheelchair bound
  • Trouble with breathing – A child with Rett may have uncoordinated breathing and seizures, including very fast breathing (hyperventilation), forceful exhaling of air or saliva, and swallowing air

The Israel Rett Syndrome Research and Treatment Foundation

Israel Rett Syndrome Foundation, an Israeli non-profit organisation was established in 2001 to coordinate all efforts and needs associated with Rett syndrome in Israel. Aside from its efforts to seek funding for medical research to find a cure, the Israel Rett Syndrome Foundation also seeks to raise funds to provide for the best possible quality of life for Israelis suffering from Rett syndrome and their families. The program offers support, relevant knowledge, training and advocacy to improve the quality of life for sufferers. The Israel Rett Syndrome Foundation is the only organisation of its kind addressing the well-being needs of this specific population in Israel.

The foundation serves some 1000 people a year from all over Israel, which include the patients, their families, and professionals.

Services

The three realms of the Therapeutic Infrastructure:

  1. Provide families with guidance, consultations, and support
  2. Disseminate knowledge and training to professionals in the medical and paramedical fields as optimal skilled care for the girls who are dependent on this
  3. Advocate on behalf of the victims and their families

Services of the proposed activities include:

  • Families – are provided with guidance, consultations, and support through:
    o educational and social meetings with parents and other family members of Rett syndrome patients
    o dissemination of professional literature for families
    o caregivers
    o family support groups
    o assisting families to access government benefits and entitlements
  • Professionals – Optimal skilled care for the girls is dependent on the dissemination of knowledge and training for professionals in the medical and paramedical fields. To this end the foundation conducts seminars and training sessions
  • Advocacy – The foundation advocates on behalf of the victims and their families within the governmental, legislative, medical, educational, and social systems. The foundation belongs to a Rare Diseases coalition that meets with Israeli MPs and Ministry of Health officials in an effort to legislate a Rare Disease law

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