ROKIHub
a Rokitansky Community
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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
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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!
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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.
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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.
The Forum represents a fundamental element of the ROKIHub world, and it is very important to understand how it works correctly in order to use it.
as best as possible so as to obtain and provide the maximum support possible.
Access to the forum is exclusive to those who are members of the site, the page is not visible to non-members.
There are three main categories into which it is divided based on the type of users you want to interact with:
- ROKIHub General Topics
Anyone registered on the forum can access, write and read this section. Specialists, moderators and site managers are admitted;
- ROKIClan
the exclusive clan for ROKI, only those affected by Rokitansky Syndrome can access, write and read this section, they are allowed
Specialists, moderators of the same category and site managers.
- ROKIParentsClan
the exclusive clan for ROKI PARENTS, only parents can access, write and read this section, Specialists, moderators of the same category and site managers are allowed.
For this reason, it is essential to correctly register on the site, indicating which category you belong to. Registrations on the site are accepted or not by the moderators and managers of the site.
ParentsClan
Il clan esclusivo per i GENITORI ROKI, solo i genitori possono accedere, scrivere e leggere questa sezione, sono ammessi gli Specialisti, i moderatori della stessa categoria di appartenenza e i gestori del sito.
GeneralTopics
Chiunque iscritto al forum può accedere, scrivere e leggere questa sezione, sono ammessi gli Specialisti, i moderatori e i gestori del sito; moderatori della stessa categoria di appartenenza e i gestori del sito.
ROKIClan
Il clan esclusivo per le ROKI, solo chi affetto da Sindrome di Rokitansky puo accedere, scrivere e leggere questa sezione, sono ammessi gli Specialisti, i moderatori della stessa categoria di appartenenza e i gestori del sito.
What should I know before joining the Forum?
The Forum represents a fundamental element of the ROKIHub world, and it is very important to understand how it works correctly in order to use it.
as best as possible so as to obtain and provide the maximum support possible.
Access to the forum is exclusive to those who are members of the site, the page is not visible to non-members.
However, for those who deem it necessary, it is possible to create a new email not linked to your data, but filling in the category you belong to correctly.
There are three main categories into which it is divided based on the type of users you want to interact with:
General Topics, ROKIClan, ParentsClan
For this reason it is essential to correctly register on the site, indicating which category you belong to. Registrations on the site are accepted or
less from the moderators and site managers.
Access to the forum is exclusive to those who are members of the site, the page is not visible to non-members.
However, for those who deem it necessary, it is possible to create a new email not linked to your data, but filling in the category you belong to correctly.
By clicking on Login you will see a screen like the image below.
For maximum confidentiality, the registration option via email is the most suitable.
Registrations to the site are accepted or not by the moderators and managers of the site.
Use this space to write a brief overview of a product or service, focusing on how users can benefit from it.
Reach New Heights
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Feature 01
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Feature 01
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Feature 01
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Feature 01
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Describe a feature you’d like to share about this company or highlight a particular service it offers.
Accessibility Statement
This statement was last updated on [enter relevant date].
We at [enter organization / business name] are working to make our site [enter site name and address] accessible to people with disabilities.
What web accessibility is
An accessible site allows visitors with disabilities to browse the site with the same or a similar level of ease and enjoyment as other visitors. This can be achieved with the capabilities of the system on which the site is operating, and through assistive technologies.
Accessibility adjustments on this site
We have adapted this site in accordance with WCAG [2.0 / 2.1 / 2.2 - select relevant option] guidelines, and have made the site accessible to the level of [A / AA / AAA - select relevant option]. This site's contents have been adapted to work with assistive technologies, such as screen readers and keyboard use. As part of this effort, we have also [remove irrelevant information]:
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Used the Accessibility Wizard to find and fix potential accessibility issues
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Set the language of the site
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Set the content order of the site’s pages
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Defined clear heading structures on all of the site’s pages
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Added alternative text to images
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Implemented color combinations that meet the required color contrast
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Reduced the use of motion on the site
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Ensured all videos, audio, and files on the site are accessible
Declaration of partial compliance with the standard due to third-party content [only add if relevant]
The accessibility of certain pages on the site depend on contents that do not belong to the organization, and instead belong to [enter relevant third-party name]. The following pages are affected by this: [list the URLs of the pages]. We therefore declare partial compliance with the standard for these pages.
Accessibility arrangements in the organization [only add if relevant]
[Enter a description of the accessibility arrangements in the physical offices / branches of your site's organization or business. The description can include all current accessibility arrangements - starting from the beginning of the service (e.g., the parking lot and / or public transportation stations) to the end (such as the service desk, restaurant table, classroom etc.). It is also required to specify any additional accessibility arrangements, such as disabled services and their location, and accessibility accessories (e.g. in audio inductions and elevators) available for use]
Requests, issues, and suggestions
If you find an accessibility issue on the site, or if you require further assistance, you are welcome to contact us through the organization's accessibility coordinator:
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[Name of the accessibility coordinator]
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[Telephone number of the accessibility coordinator]
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[Email address of the accessibility coordinator]
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[Enter any additional contact details if relevant / available]
Our Team
This is the space to introduce the team and what makes it special. Describe the team culture and work philosophy. To help site visitors connect with the team, add details about team members’ experience and skills.
Jesse Neimus
Position / Role
Describe the team member here. Write a brief description of their role and responsibilities.
(123)456-789
Taylor Quill
Position / Role
Describe the team member here. Write a brief description of their role and responsibilities.
(123)456-789
Kris Ward
Position / Role
Describe the team member here. Write a brief description of their role and responsibilities.
(123)456-789
Morgan James
Position / Role
Describe the team member here. Write a brief description of their role and responsibilities.
(123)456-789
ROKIHubs Goals
Our Hub is a concentration of evolving and developing activities.
Our main goals are listed below,
Partners
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