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Making a difference
in rare diseases

Join the community

How does it work?

Created by Òmada Interactiva.

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!

  • Psychosocial impact of neuromuscular diseases
See all studies

TOOLKIT FOR PATIENT ADVOCACY

Check out the chapters, use the templates and define your strategy to set a strong base for your advocacy effort. Raise awareness and understanding in your rare disease in terms of communication, research, education, and much more.

  • Essentials
  • Strategy
  • Communication
  • Research
  • Education
  • Resources
See full TOOLKIT

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

Register

  • Barefoot calzado niño manos madre
    24 April 2025

    New study on Share4Rare: Barefoot-style shoes for children with Epidermolysis bullosa simplex

  • Baner research project selection 2025 share4rare rare diseases
    24 February 2025

    Selection of research projects based on patient-reported data 2025

  • rare horizons podcast banner episode 3 biobanks share4rare
    15 November 2024

    Biobanks: Research allies. A new episode of Rare Horizons.

  • bebé prueba del talón enfermedades raras share4rare
    05 November 2024

    The role of patient organisations in implementing newborn screening for rare diseases

Our protagonists

Violeta Astratinei

When my sister was diagnosed with melanoma I looked for treatment options for her. Need really changes how one thinks about what is important.

Violeta Astratinei, founder of Melanom Romania

Bettina Ryll

Melanoma is a medical and a mental challenge. Better understanding its mental burden will help us to better advocate for what matters to patients.

Bettina Ryll, founder and chair of the MPNE

Gilly Spurrier

We see in our community the distress melanoma causes. We need to be able to better support patients and those who care for them.

Gilly Spurrier, founder of Mélanome France

Guillermo Chantada

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

Dr. Guillermo Chantada

Marcelo Andrade

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

Dr. Marcelo Andrade

Caption of Sheonad Macfarlane playing with her child, a girl suffering SMA

Our children, although with different genes and conditions, share common symptoms and treatments. We can share our vast experience and help others.

Sheonad Macfarlane, mother and caregiver

Sharing information over Share4Rare

Share4Rare offers advice and information on specific rare conditions.

Nicky, mother and caregiver

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

I can also contribute with my practical and emotional experience adquired during all these years living with a daughter with functional diversity

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 nobody experiences the same feeling of loneliness that we experienced when we receives Pol's diagnosis.

Pol is affected by xeroderma pigmentosum

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 other families so they do not feel as bad and lost as I feel.

Litza, Mia Regina's mum

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 and still do not have a diagnosis.

Sandra, Edu's mum

Íngrid is a 12 year-old girl from Vilanova i la Geltrú (Barcelona) and when she was 10 she was diagnosed with acute lymphoblastic leukemia

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

Íngrid was diagnosed with LLA when she was 10

Begonya Nafria, Coordinator of Patient Engagement in Research at HSJD

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

Begonya Nafria

Cecilia Jiménez, doctor at the Sant Joan Hospital

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.

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

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Share4Rare | Santa Rosa, 39-57 | 08950 | Esplugues de Llobregat (Barcelona) |  Spain | info@share4rare.org

Last updated on Viernes 9 de Mayo de 2025 a las 09:46

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