How can we help you?
How do I join Share4Rare?
The registration process has been designed to guide you along the different steps.
Step 1: Personal information about the user. This is information about the user registering for the platform, either a patient or a caregiver of a minor.
Step 2: After receiving a confirmation email, you will need to set up your password.
Step 3: Patient’s information. If you said that you are an adult patient, this will be almost completed. If you are a caregiver, you will need to add information about the patient you are taking care of.
Step 4: Symptoms. This will probably be the most important step in the registration process. The symptoms you enter in this step will be used to calculate your similarity to other patients and will target the questions you see in the community to other users with high probability to help you. Do not worry if you want to add or change information later, you will be able to do it when editing your profile.
Step 5: Legal terms. These are claims to ensure your usability of the platform.
Once you are registered, it is important that you are validated. To this end, you will need to go to your patients and edit them. Please upload the correspondent signed informed consent along with your ID document and medical proof of your diagnosis. This process will ensure that the Share4Rare community will be a safe and secure space only for patients and caregivers. If you have not received the diagnosis yet, you can provide us any medical document where this situation will be described.
Why join Share4Rare?
By registering for Share4Rare, you will be joining an online and global community designed by and for patients and families affected by a rare disease. Share4Rare allows people to connect with others with the same disease. It also connects people who may have a different disease but similar symptoms. Connecting with others on Share4Rare helps to break the isolation often associated with living with a rare condition.
The information that you enter into your profile during the registration process will be used to match you with others who are ‘like you’. If you decide to make your profile visible in the private messaging tool, you will be able to communicate directly with other users, starting with those who most closely match your profile.
You will also be able to ask questions using the community Q&A tool and respond to questions asked by others.
As a registered user of the S4R platform, you will also have the opportunity to answer some additional questions about your condition and your experience of living with a rare disease. The information you provide will be used to help form a basis for new research projects. You will also receive aggregated data showing your position relative to other users.
Can I register if I am not affected by one of the listed diseases with a research project ongoing in Share4Rare?
Yes, you can! Share4Rare is open to everyone affected by a rare condition. By adding your symptoms to your profile, you will find a community of people like you.
Regarding the listed diseases, Share4Rare is currently in its pilot stage and it is based in the Orphanet database. Specifically for research purposes, we are currently piloting two disease groups of conditions: paediatric rare tumours and rare neuromuscular disorders. This means that research questions and medical chapters will be developed to cover those initially but as we grow, we will be able to incorporate other conditions to the research-focused part of the platform.
How many symptoms should I list?
List all of your symptoms during the registration process. This is especially important as they will be used to connect you with others in the community. The more symptoms you list, the better. You can add or remove symptoms from your profile at any time, and it is important for this information to be accurate and up to date. The list of symptoms of Share4Rare is based in the Human Phenotype Ontology classification, that is very accurate and offers symptoms accordingly with the different systems of the body affected by them.
Can I attach diagnostic test results or images to my patient profile?
Yes, in fact, this information is necessary to validate you as a user.
If you want to add more documents, there is an option to add more to your patient’s profile. You can upload as many documents as you want. This information will be meaningful for the research purposes of the Share4Rare.
Access to the instructions to get validated here: