Welcome to the Share4Rare community
Please read these terms and conditions of use carefully. Share4Rare is a project funded by the European Commission (GA 780262) with a mission to improve the quality of life and promote research for rare diseases patients.
By using Share4Rare, you are confirming that you have read, understood and agree to be bound by these terms. If you do not agree to these terms, you are not permitted to use Share4Rare.
Share4Rare provides a common online interactive space for community members to meet together, share, learn, and communicate.
To become a community member of Share4Rare, we require that you satisfy certain eligibility criteria, meaning that you are any of the following:
- A patient diagnosed with a rare disease who is at least 18 years old (Patient).
- Parent or legal guardian acting for a patient who is under 18 years of age or otherwise incapacitated (Caregiver);
- Patient advocate;
Minors should be registered preferably by a legal representative in case of more than one relative getting registered in the community. This second figure will be able to see the information of the patient but only the legal representative will be able to edit it.
All users will need to upload an informed consent to verify his/her identity.
In case of being patient and caregiver of a minor at the same time, you should register as a patient first and you will be able to register another patient entity afterwards in your profile.
You certify that the information you provide regarding yourself is true and accurate and not misleading. Profiles of entities or organisations are not permitted. This information will be used to personalise your interactions and connect you to people based on your diseases, symptoms, country, user type and expertise.
You are responsible for maintaining the confidentiality of your password, as well as your personal sensitive data.
All the members of Share4Rare must follow the working guidelines related to the use of personal data, in accordance with Spanish law in this area and the GDPR. They must endeavour not to post illegal content (slander and insulting language), to respect the privacy of the other members and health care professionals. Finally, they must follow the laws governing the rights of authorship and property of images applicable in their country.
No minors. Children under the age of 18 are prohibited from registering on the platform.
Research communities will be enabled for adult patients, caregivers, clinicians and researchers, once a project has been submitted and approved by the Share4Rare board.
There are two added roles in these research communities:
- Healthcare professionals of different medical specialities (Clinician) can be invited to join when a patient or a caregiver invites him/her with a private process via email. This key is personal and non-transferable.
- Scientific or medical researcher (Researcher) can be part of the research team of a project, not patient communities.
Medical questionnaires: they will be produced by expert clinicians and answered by the correspondent patients and/or caregivers.
Statistical information on the symptoms of the disease. Once the patient and/or caregiver has completed a questionnaire, he or she will have the chance to examine a summary of the information posted by the other members of the patient community, processed by a researcher and presented in an anonymous statistical format.
All suggestions concerning how the investigative resources offered by this platform might be improved, both from the medical community members and from the family community members are welcome. Suggestions may be submitted at all times to the following email address: firstname.lastname@example.org.
You agree to respect the code of conduct, which outlines acceptable use and participation in Share4Rare, including when certain activities or communications may result in suspension or termination of your access to the site. Prohibited, including but not limited to the following, is the transmission or sharing with third parties using this service, of information, messages, graphic images, sound or image files, photographs, recordings, software, and any other kind of material, data or contents that:
- In any way threatens or abuse other members of the community or any third party not part of it.
- Include obscene content or content that might injure the sensitivities of any third party viewing them.
- Include content that might infringe upon or harm the legal rights of others, such as defamatory material or material that infringes on the intellectual or industrial property rights of others.
- Include photographs, videos, or other graphic material in which minors appear without the permission of the minor’s parents or legal guardian.
- Encourage others to violate the present legal notice and the policy of protection of personal data of this platform.
- Are published with the intention of presenting a false impression of identity, either as a member of the website staff or as another member of the community, by means of a method or device to simulate a false identity.
- Are intended for commercial, advertising, or illegal ends, as well as the distribution of junk mail, spam, chain letters, or mass mailings.
- Infringe upon the norms of secrecy in communications.
For their part, those responsible for the website (“Share4Rare staff”) reserve the right to withdraw or suspend any user of the community for failure to comply with the terms of the legal notice or the policy on the protection of personal data of the website. They may also eliminate, withdraw, or suspend any message that includes information of the kind specified in numbers 1-8 above, without the need for prior warning or subsequent notification. Furthermore, those responsible for the website may erase any posting that is not in compliance with the norms of the community.
Each User is encouraged to report other users or content which don’t follow the Code of conduct.
The content on the platform is for informational purposes only. The content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment.
We do not monitor or authenticate the information contained on the community and produced by the users for accuracy, safety, or reliability. Inclusion of content on the site does not mean that we support or recommend a specific treatment, drug, physician, test, or other information on Share4Rare.
Share4Rare own all content developed or acquired by us but excluding third party content itself. Our content is protected under Spanish and international copyright Laws and is subject to other intellectual property and proprietary rights and Laws. You are not authorised to use any of our content other than as expressly provided in these terms or as expressly licensed to you. You must not remove any marks, copyright, or other notice from the site or any of our content.
The technology underlying the site is Share4Rare property. Any rights not expressly granted herein are reserved by Share4Rare.
No Responsibility for Third Party Content. Third party content will be always referenced to the original source of information and authors, with date of last revision. Under no circumstances will we be liable in any way for any content or materials of any third parties (including community members). We do not endorse any particular products, services or treatments. We take no responsibility and assume no liability for any third party content.
Notice and Takedown Procedures / Copyright Agent. If you believe any materials accessible on or from the site infringe your copyright, you may request removal of those materials (or access thereto) from the site by contacting us.
Linking to Share4Rare. If you wish to link to Share4Rare, you may include an active link on any website you control directing a browser to the home page of that site, provided that you agree to remove the link at any time upon our request.
Infringement Claims. We respect the intellectual property rights of others. Accordingly, we have a policy of removing third party content that violates copyright, trademark, or other intellectual property laws, suspending access to Share4Rare to any community member who uses the site in violation of any such law. If you believe your copyright, trademark, or other intellectual property right is being infringed by a user of the site, please provide written notice to us at email@example.com.
Last Updated: 21th of February of 2019