Information Center for Rare Genetic Diseases

The Romanian Prader Willi Association is accredited to provide the following social services, according to the Accreditation Certificate No. A Series. 0000777 from January 3rd, 2006, issued by the Accrediting Commission of Social Service Providers Salaj:

 

- Information on rare genetic diseases -

The purpose of this service is to facilitate access to existing information and resources on rare genetic diseases, and to redirect beneficiaries to other sources of information:
  • information about the disease;
  • information about associations, centers, specialists, experts, etc.
  • exchange of information / experience among people affected by the same rare disease or the same syndrome.
Beneficiaries of this service are:
  • people affected by rare diseases and/or their families;
  • health-care specialists and other specialists (personal assistants, psychologists, etc.);
  • other associations and foundations.
Procedures of the services:
  • receiving the request, through telephone, mail, e-mail, fax or personal contact;
  • filling in a request form, which will be part of our database, with fields as: contact data, complete name of the disease, age and gender of the patient, name of the patient (if agreed), name of the caller and his relationship with the patient (if it is not the patient);
  • in case we do not have information about the disease, we start the search for accurate information;
  • searching information, translation if needed, validation by specialists - doctors, psychologists, other specialists;
  • directing to other specialized organizations or institutions if needed;
  • responding to the request;
  • proposing contact with other people or groups;
  • filing the request form, which will be updated if needed.

- Counseling in rare genetic diseases -

 
 
Purpose of counseling activities: The counseling the families / the patients with disabilities caused by rare diseases is a set of preventing and supporting activities in order to ensure the proper care, education and integration of the affected person.
 
 
 
Beneficiaries of this service are
  • people affected by rare diseases;
  • their families;
  • personal assistants.
 
Our principles in according these services:
  • respecting each person's individuality;
  • respecting freedom of beneficiaries to choose counseling activities based on their specific needs;
  • ensuring access to social services in terms of equal treatment, by eliminating all forms of discrimination;
  • providing quality services, affordable, flexible, adapted to social needs;
  • ensuring the rights and safety of beneficiaries, while also protecting their personal and collective interests;
  • respecting the private life of the person;
  • confidentiality.