Rare Diseases Awareness Partners

Debra Egypt Foundation for Epidermolysis Bullosa Patients

Mrs. Hanaa El Sadat founded the Yasmin Elsamra Charitable Foundation for Epidermolysis Bullosa (DEBRA) in Egypt in 2014 (Registration No. 6473), as a non-profit organization, following the passing of her daughter Yasmin at the age of 15 due to this rare and severe genetic condition.

The foundation aims to provide comprehensive support and care to over 400 individuals living with Epidermolysis Bullosa (EB), a genetic disorder that causes the skin to be extremely fragile and prone to blistering and wounds from even the slightest friction or touch.

It is the only organization in Egypt dedicated to supporting all EB patients across all governorates. The foundation also advocates for the inclusion of EB patients under the “5% disability quota” to ensure they and their families experience hope, comfort, and safety.

Additionally, the foundation facilitates access to specialized medical professionals for consultations and family guidance. It is committed to covering monthly medical supplies and surgical procedures based on physicians’ recommendations.

The foundation also provides psychological and emotional support to improve the patients’ quality of life by organizing artistic and recreational activities that nurture children’s talents and encourage their participation in exhibitions and community events.

It is the first organization in the region to collaborate with DEBRA International and the National Research Centre of Egypt in organizing the first international medical conference on Epidermolysis Bullosa in North Africa and the Gulf region, held in April 2024 in Egypt. The conference contributed significantly to advancing research on potential curative therapies for EB.

Foundation Vision:
With hope, faith, compassion, and love, the foundation believes it can bring real change to the lives of those affected by Epidermolysis Bullosa. It strives to provide a safe and supportive environment for patients while raising public awareness about this rare condition.

Friends of the Bright Tomorrow for Mental & Physical Disabilities

DISABILITY IS NOT INABILITY

This association was established 30 years ago by a group of parents of children with mental and physical disabilities, aiming to provide comprehensive and diverse services to children with disabilities.

These include:

  • A school with educational classrooms, designed by age group
  • A fully equipped gymnasium with sports equipment
  • A swimming pool dedicated to physical therapy
  • Sections for art, computer skills, music, pottery, home economics, and agriculture
  • A vocational training department focused on training students in various workshops
  • A rehabilitation department that aims to develop students’ skills and transit them to workshops
  • A training department for work and employment skills
  • A medical department that includes physical therapy, speech therapy, and sensory development
  • A special Autism department, which aims to training parents on how to interact with their children, along with sensory rooms equipped with modern tools
  • A fully equipped kitchen to serve students with healthy food
  • A healthy accommodation for those without families (orphans)
  • A dance and acting room for those with artistic talents

With love and giving, tomorrow becomes brighter

Nidaa Association for Children with Hearing Impairments

Nidaa Association is one of the leading organizations working in the field of rehabilitation for children with hearing impairments, multiple disabilities, and hearing-visual impairments. It holds a license from the University of Zagreb, Croatia, accrediting it as an accredited center for the rehabilitation of children with hearing impairments using the methods and approaches of intonation. Nidaa Association is one of the first organizations in the Arab Republic of Egypt to rehabilitate people with hearing impairments, since 1997, through intonation programs and language and speech education.

 Since 2002, Nidaa Association has been the first association in Egypt and the Arab world to provide educational and rehabilitation services to deaf-blind individuals, accredited by the University of Oslo in Norway.

Nidaa Association works to disseminate its expertise by enhancing the competence of specialists and teachers through training programs in cooperation with the Ministry of Social Solidarity and the Ministry of Education and Technical Education. It also produces publications, activity guides, and family guidance program guides. It also holds seminars and conferences in cooperation with universities by signing cooperation protocols.

Nidaa Association is committed to establishing nurseries for the education and rehabilitation of hearing-impaired children (nine branches) in various governorates to prepare them for entry into public schools or in accordance with the educational integration system. This is achieved through teaching Nidaa’s rehabilitation programs, as well as academic programs for kindergartens, drawing, music, and sports.

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