Funded project

Comprehensive care for children with neurofibromatosis

Spain

In Spain every week 3 children are born with neurofibromatosis.

Funded thanks to:
  • Donors
  • Total raised
    100%raised
    • Banc Sabadell clients 5.098€
  • Direct beneficiaries 275

    Those people who have naturally benefited from the project's interventions.

  • Indirect beneficiaries 1.100

    Those identifiable people who will potentially recieve an effect from the project's activities.

ASOCIACIÓN DE AFECTADOS DE NEUROFIBROMATOSIS

Budget

  • Staff 5.098€
  • Total 5.098€
5.098€

Description

Neurofibromatosis is a rare disease (1/3000 born), chronic and incurable and in many cases its symptoms are causing disability. Those affected by this disease present many difficulties, highlighting physical, psychological and sensory problems: epilepsy, bone problems, deafness, blindness, increased risk of malignant tumors, disfigurement or learning difficulties.

The manifestation and evolution is very variable, a condition that produces uncertainty and helplessness, which if not accompanied by adequate and professional support, can lead to psychological disorders. For this reason, those affected need a specialized service to cope with the disease and its social and psychological consequences.

Through this project, the Asociación de Afectados de Neurofibromatosis aims to cover all the needs of the child with neurofibromatosis, performing activities of medical guidance, social counseling, individual and family psychological therapy, training courses and educational guidance.

Activities

  • Provide children with neurofibromatosis with the tools they need to achieve an improvement in the quality of life, reducing the impact of the disease and its consequences.
  • Perform activities of medical guidance, social counseling, individual and family psychological therapy, training courses and educational guidance.

Who will benefit?

Children and young people affected by neurofibromatosis, in which there are disorders of ADHD, speech delay, concentration problems, low mood in children, anxiety, problems of self-esteem and relationships, isolation, important feelings of loneliness, cases that require professional intervention both with the child and with the parents to achieve greater effectiveness, and in turn, greater well-being and satisfaction.

Project objectives

  • Provide emotional well-being and increase the quality of life of those affected by neurofibromatosis, reducing the impact of the disease and alleviating the suffering of children and their families, advising the educational community and equipping them with the necessary knowledge to achieve adaptive coping with guarantees of the situation.
  • To favor the social integration of those affected and reduce the risk of exclusion in children with neurofibromatosis, achieving the involvement of the professionals involved in it.

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