Share4Rare

The project
- The project
- Our story
Rare diseases
Blog
- Blog
- Press room
Contact
- Contact
- FAQs

Username or email address.

Password

Forgot password?

New in Share4Rare?Register!

Making a difference
in rare diseases

Join the community

How does it work?

Learn!

Find expert information that is easy to understand. Access our materials and blogs.

Connect!

Meet people like yourself by joining our global community.

Share!

Share your diseases and your symptoms to help us find people who are just like you for you to connect!

Participate!

Contribute to research by donating medical information about your disease.

Diseases

Share4Rare is going to be piloted with three groups of conditions: rare tumours, neuromuscular disorders and undiagnosed. Besides, we publish quality medical content for these conditions and more, and other diseases are constantly being added to our activities.

Check back from time to time!

The impact of neuromuscular diseases
Disease burden of undiagnosed patients
Effects of the treatment of ALL

See all studies

No one is alone in Share4Rare. Come in, meet peers, join forces. Make the difference.

19 October 2020

Lessons learned: Share4Rare’s new Digital Informed Consent
14 October 2020

The case of undiagnosed profiles in Share4Rare
07 October 2020

Gathering people’s knowledge on cell and gene therapy to create tailored educational materials for patients and citizens
05 October 2020

The MRC Centre for Rare and Neuromuscular Diseases Biobank

Our protagonists

"The only way to know how COVID-19 impacts patients with rare diseases is international collaboration as proposed by this project. This way we can

Dr. Guillermo Chantada

"The pandemic caused by SARS-CoV-2 exposes patients with rare diseases to an unprecedented situation that must be analysed."

Dr. Marcelo Andrade

Our children, although with different genes and conditions, share common symptoms and treatments; we can share our wealth of experience with others.

Sheonad Macfarlane

Share4Rare offers advice and information on specific rare conditions.

Nicky

When Edu was born he could not open his eyelids, but doctors did not find that a reason for not discharging him from hospital.

This project is very important for the people of our association and for all those people who are like Edu, those who still do not have a diagnosis.

Edu

Share4Rare will help us meet other families living similar conditions to that of our daughter and keep up to date with the latest treatment advances.

Íngrid

Bruna was diagnosed with a very uncommon genetic condition: a 19p13.3 deletion

I can also contribute with my practical and emotional experience during all these years of living with the reality of a daughter with functional

Natalia, Bruna's mum

Pol suffers from a rare genetic disease that makes his skin extremely sensitive to the damaging effects of ultraviolet radiation

I would like that those people do not have to experience the same feeling of loneliness that we experienced when we receive Pol's diagnosis.

Pol

Litza recently contacted us from Mexico to tell us about her daughter's case.

I am willing to contribute as much as I can to help my daughter and so that other families do not feel as bad and lost as I feel.

Litza, Mia Regina's mum

Share4Rare is a patient centered platform focused in the research that matters to patients.

Begonya Nafria

We investigate to deliver effective tratments and the only way forward is to work in parthership with patients and families at all stages of research

Cecilia Jiménez

Oncologist at the Hospital Sant Joan de Déu

Research is the only way to get around the limits.

Jaume Mora

The talk inside Share4Rare

Is there anyone with spina bifida that has relatively normal mobility in the legs?

I would like to contact other people who have a similar type of SB to be able to exchange impressions about health problems, symptoms and psychological aspects.

How is the research on Xeroderma Pigmentosum and in particular in Spain?

The largest updated source of information is PubMed, a specialized search engine where all recent publications in any scientific field are indexed.

Does anyone know why radiotherapy for children with brain cancer can vary from country to country in the EU?

Most referral centres in Europe with expertise in treating children and adolescents with brain tumours use collaborative protocols.

Undiagnosed patients can have common symptoms with diagnosed patients and share feelings and experiences.

In Share4Rare you can access people living the same experiences through the tool "People like me".

Let's take care of siblings of children with a rare disease.

I would like to know if there are any families in the community with a child who has participated in mutual support groups between siblings.

Where can I find information on home-hospital educational care for children with serious illnesses in Europe?

I would like to know if you know any updated page on hospital classrooms and home educative care for children with chronic and / or disabling diseases that refers to European and other countries such as the US, Australia, etc.

How do we promote research in rare diseases?

Only by joining our strengths we will be able to break the walls that isolate patients affected by rare diseases!

How could you predict the progress of a muscular dystrophy in a child?

We suggest you visit the Orphanet link, a European reference portal for rare diseases, so that you can access validated information on this pathology.

I want to know if there is someone in the platform with expertise receiving the summary of a clinical trial outcome.

I want to meet people with this kind of experience. If someone is in this community, please contact me.

Subscribe to the Share4Rare newsletter for the latest news and updates!

This project has received funding from European Union’s Horizon 2020 programme under Grant Agreement 780262

Facebook
Twitter
LinkedIn
Instagram
Youtube

Share to help us reach patients with rare diseases all around the world!

Instagram

Last updated on Monday, October 19, 2020 at 12:20

Footer menu

Legal advice
Cookie policy
Contact

Almost there... but still some information to go!

We have just sent you an email with a one time only validation link. Please, check your inbox (or spam folder if you can't find it) and follow the click on the link to complete your registration and start using Share4Rare.

It will only take a few minutes!

Thank you!

You are now part of the Share4Rare community.

Just remember that, in order to take full advantage of this platform, we still need to validate your identity. You will need to upload some documentation to be able to access all the functionalities and connect with your peers.

Let's make Share4Rare extraordinary!

Sign and accept the informed consent for you or your patients

Please, read carefully and complete the informed consent document.

Since all research will be conducted by and for the patients, it is fundamental that you provide information to accept the informed consent for each of them. This document is dynamic and will be adapted to new future needs. Whenever we need you to give your consent again or reject this one, we will notify you.

Personal ID validation

In order to validate your informed consent, we will need to verify your identification document (ID). Please, attach a valid ID document (national card number or passport) to give you access to the platform. Please scan the front and back information on your ID card or the full first page of the passport where your image can be seen and upload the image.

I will do it later

Making a difference in rare diseases