The Roki Institute was created to support women with Rokitansky Syndrome and their families by sharing experiences and updated information in partnership with healthcare professionals.
OUR HISTORY
The Roki Institute was founded through the meeting of two women with Rokitansky Syndrome and a mother. On this journey, we have learned that sharing experiences and updated information, in partnership with healthcare professionals, can be highly supportive and helpful. Our purpose as an Institute is to emotionally assist other women and families in the same situation; by involving all parties, this challenge can be faced and overcome with the necessary support and comfort. We are here for all these women, their families, and healthcare professionals who are part of this journey.
OUR COMMITMENT:
With patients and families, we aim at:
- Assisting women with the Rokitansky Syndrome in different stages: diagnosis, treatment, issues related to sexuality and motherhood, providing information based on science and individual experiences;
- Offering emotional and psychological support needed for women and families living with the Rokitansky Syndrome;
- Facilitating the acquisition of dilators through physicians;
- Encouraging the reviewing and updating of laws regarding adoption and surrogacy;
- Organizing virtual meetings to connect people involved with the Rokitansky Syndrome.
With healthcare professionals, we aim at:
- Creating a network and connecting knowledgeable professionals in the medical field (gynecologists, urologists, pediatricians, cardiologists, gastroenterologists, orthopedists, and otolaryngologists), mental health (psychiatrists and psychologists), and integrative medicine (physiotherapists, physical educators, specialists in auxiliary methods, such as mindfulness, yoga, reiki, among others);
- Encouraging and connecting Brazilian and international universities to conduct studies in genetic, diagnostic, and therapeutic areas
- Implementing continuing medical education programs for healthcare professionals, aiming at the increase of diagnostic accuracy and appropriate treatment.