We are About

the ROKIHub Mission

Welcome to ROKIHub, a portal created to create a support center, digital and otherwise, dedicated to people affected by Rokitansky-Rokitansky Syndrome and their families, both those of origin and those in the future.

CONNETTERE.SUPPORTARE.GUIDARE

Welcome to ROKIHub, a portal created to create a support center , digital and otherwise, dedicated to people affected by Rokitansky-Rokitansky Syndrome and their families , both those of origin and those in the future.

The core principles of our Hub are to connect, support and guide. We want to be present and active in providing services to our members and anyone who needs them, through our help desk.

ROKIHub is founded on the principles of collaboration, openness and transparency . We firmly believe that only by working together can we make a difference.

For this reason, we are already in negotiations to establish partnerships with other associations and entities, not only on the national territory, but also at an international level.

Our commitment is to include in the network Specialists capable of providing direct and indirect assistance to members , thus improving the quality of life of all members of our community.

It is essential for us to communicate to all visitors of our ROKIHub portal the importance of collaboration and unity: without them, nothing can exist. We invite all those who will be part of this help desk, and not only, to consider the opportunity to actively contribute to our support structure, not only for themselves, but also for the well-being of others, and therefore the collective growth, evolution and improvement of the services that we could develop.

Together, we can build a strong and welcoming network to address the many challenges related to Rokitansky-Küster-Hauser syndrome.

We are working to open as soon as possible an effective recognized and structured association, thanks to the experience of support, sharing and dissemination gained in these years by the members of the Hub.

DO YOU SHARE OUR PRINCIPLES AND WOULD YOU LIKE TO KNOW MORE?
DO YOU WANT TO JOIN OUR TEAM?

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ROKIHubs Goals

Our Hub is a concentration of evolving and developing activities. Our main goals are listed below.

ROKIHub's Projects

ROKIHub projects are very ambitious, but we strongly believe that they can be achieved with the necessary time and methods. Currently you can find the program divided into points based on the progress of the individual objectives, if you think you can lend a hand to achieve one or more of the Hub's goals, we are all ears!

What are we aiming for...

WIP Points

ROKIHub SPECIALISTS
Creation of a database of Specialists of various disciplines, Gynecology, Endocrinology, General Practitioners, Psychology, Psychotherapy, Sexology, Surgery, public or private circuit, divided by Region, Province, City, with the relative contacts to be directly traceable by families and patients.
REFERENCE CENTERS for ROKIHub
List of Reference Centers in the country, specialized in the treatment of Rokitansky Syndrome, with a description of the center, therapeutic approach, and direct contacts.
SURVEYS and INTERVIEWS
It is ROKIHub's firm intention to be in continuous contact with patients and families to welcome the needs, initiatives, suggestions and ideas that will be the driving force of a supportive and constantly evolving Hub.
ROKIHub PACKAGE
After confirmation of registration, you will receive an information package containing the exemption code and the procedure for recognition (acceptance varies from region to region and from province to province), the list of Reference Centers in Italy with their contacts, the list of Specialist doctors in Italy and their contacts, the procedure for requesting civil disability (not recognized for everyone and different for each case, it always varies from region to region and from province to province).
MULTILINGUAL TRANSLATION
ROKIHub strongly believes in the union of peoples and cultural connection as a tool for evolution and improvement. Every Roki and Roki family knows how difficult it is to find the right diagnosis and the time that this result requires, for this reason we want to try to reach even those who have fewer tools available than Italy. We are working to translate the site into as many languages as possible, especially those of countries where medicine and health, especially women's, is not a topic to be taken for granted. If you think you can help us, write to us and we will be happy to have an extra hand!

PARTNERS & COLLABORATIONS
ROKIHub is working to create a network of communication, exchange, dissemination and collaboration with other associations. We are currently in communication with FecondaScelta, DuvetDays, MRHKConnect (UK); with whom we hope to be able to grow and create future projects together. We are constantly working to create connections with many other associations and realities of various kinds.

FUTURE Points

Question and Answer FORUMS with ROKIHub SPECIALISTS
One of our main goals is to create a first connection with the Specialists who join the ROKIHub program, through the Forum where it will be possible to ask questions and create topics to which the doctors of the network will respond directly based on the specialty involved. For better functionality, main topics will be created to answer the most common questions.
FIRST VISIT FREE for ROKIHub
We would like to be able to offer a free first private specialist visit to one of the Doctors in your area, it is an ambitious goal but we are pursuing and hope to achieve. Currently this service is not active, a communication about it will follow.
In-Person/Web MEETINGS MODERATED by ROKIHub
Thanks to the availability of the Specialists who want to take part in these meetings, we will create a calendar of events for connection and sharing for Roki and Parents, moderated based on the topic, both directly by ROKIHub and by the doctors who will participate. It will be necessary to register using the methods indicated to you.
ROKIHub WEBINAR
Webinars will be organized cyclically where it will be possible to register to participate with the methods that will be indicated. These events will be organized based on the themes that will be selected based on the needs that will arise and the availability of the different speakers.

LET'S FORM OURSELVES

ROKIHub Association

The primary objective to best pursue our goals is to establish ourselves as a third sector association, if you think you want to be part of this project write to us!!! We are establishing the board of directors for the foundation, finalizing the statute, the objectives and the methods of incorporation.

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