In the final instalment of our Open Academy Alumni interview series, we catch up with Ana Pataki, President of the Serbian PKU patient organisation, BRoMoLoGoS! Ana emphasised how the programme deepened her understanding of rare disease research and empowered her to increase collaboration between her organisation and researchers, leading to more patient-centred outcome in their projects. 💬 Patient Partnership in Rare Disease Research: Insights from EURORDIS Open Academy Alumni Read now! 👉 https://lnkd.in/eUvtxA5R #OpenAcademy2025 #alumni #training #interview #research #RareDiseases #collaboration
EURORDIS-Rare Diseases Europe
Organisations à but non lucratif
Paris, Paris 21 314 abonnés
Working across borders and diseases to improve the lives of all people living with rare diseases.
À propos
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease patient organisations from more than 70 countries that work together to improve the lives of all people living with rare diseases in Europe. By connecting and mobilising all stakeholders from within and outside the rare disease community, EURORDIS strengthens the voice of people living with rare diseases and shapes research, policies and services. Our vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no-one behind. To achieve their full potential, people living with a rare disease need to be: - recognised as equal citizens with their rights fully respected - diagnosed timely and accurately - supported by state-of-the-art medical and social care, or cured - included in society in all aspects of life and enabled to live independently Our mission is to work across borders and diseases to improve the lives of all people living with rare diseases.
- Site web
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http://www.eurordis.org
Lien externe pour EURORDIS-Rare Diseases Europe
- Secteur
- Organisations à but non lucratif
- Taille de l’entreprise
- 11-50 employés
- Siège social
- Paris, Paris
- Type
- Non lucratif
- Fondée en
- 1997
- Domaines
- patient empowerment, European networking of patients, advocacy, policy development, orphan drug policy et Rare Diseases
Lieux
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Principal
96 Rue Didot
75014 Paris, Paris, FR
Employés chez EURORDIS-Rare Diseases Europe
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Michael Wilbur
Chief Operating Officer at EURORDIS
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Valentina Bottarelli
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Roseline Favresse
Research Policy & Initiatives Director, Eurordis
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Dorota Zgodka, Ph.D.
Healthcare Principal | Product Strategy & Commercial Excellence | Policy & Advocacy | Value-Based Partnership | Customer Experience & Solutions |…
Nouvelles
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We’re just one day away from the RARE DISEASES INTERNATIONAL (RDI) webinar on the proposed Resolution on Rare Diseases for the 2025 World Health Assembly. This resolution could greatly impact the 300 million people living with rare diseases by improving care, advancing research, and raising global awareness. Don’t miss this chance to be part of the conversation. Register now: https://t.co/b6n9ontWgD
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Today marks the first day of action at the 2024 Paralympic Games! 🏅 As #Paris2024 has shown, sport is much more than just physical activity. It serves as a catalyst for connection, empowerment, and unity. For those living with rare diseases, competing in sports offers a powerful way to overcome challenges and boost confidence in a world that often feels isolating. #SportingRare If you have faced barriers to accessing sport or other social activities due to your rare condition, don’t forget to share your experience in the #RareBarometer survey: https://lnkd.in/g_Di3Dvm #RareDiseases #Sports #SocialInclusion #HolisticCare #community
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This year, RARE DISEASES INTERNATIONAL is working towards a Resolution on Rare Diseases at the World Health Assembly in 2025 - a move that could transform the lives of the 300 million people living with rare diseases worldwide. Imagine what this could mean: rare diseases recognised as a global health priority, improving access to timely diagnosis and treatment for those who often face challenges in receiving care, particularly in underserved regions. With greater focus on rare diseases, we could see a boost in research and innovation, leading to new treatments and therapies that could change the course of these conditions. RDI, in partnership with Egypt, Qatar, Malaysia, and Spain, is hosting a webinar this Friday, 30 August at 2 PM (CET) to explore these opportunities and explain why making this resolution a reality is so important. Register today: https://t.co/JTSpAMHUzu
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🗣️ “With the opportunities and technology that we have today, it should be possible for everybody to go on that journey and get an education, because it is important in our society.” - Sofie Skoubo In the second part of our conversation with Paralympian and Researcher Sofie Skoubo, Sofie shares how she’s also trying to push the boundaries of classroom accessibility with her PhD research. She’s exploring how telepresence robots can make school attendance more accessible for children with rare diseases, ensuring they not only stay connected to their education but also experience the essential social interactions that school provides. Watch now! ▶️ https://lnkd.in/eiaDABqu #Paralympics #sport #RareDiseases #community #research
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🚨 Only seven days left to submit your nominations for the #EURORDISAwards2025! 🚨 Help us find the next stars of the rare disease community! These 10 awards honour individuals, organisations, companies, researchers, scientists, media, and policymakers who are making a difference for the 30 million people in Europe and 300 million worldwide living with a rare disease. Don’t miss your chance to nominate yourself or someone who has made a lasting impact for the 2025 EURORDIS Black Pearl Awards! 👉 https://lnkd.in/ekgU6ccw #community #awards #RareDiseases #HolisticCare #nominate
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🥊 Have you faced challenges getting your disability recognised? 🤝 Are you receiving the social care you need? 🛑 How have these issues affected your mental and physical health? We want to hear from you! The #RareBarometer survey on rare diseases and daily life covers these topics and more. In just 20 minutes, your insights can help us understand the barriers you face and drive meaningful policy change for our shared future! Take the survey now! ➡️ 👉 https://lnkd.in/g_Di3Dvm #RareBarometer #EURORDIS #RareDiseases #disability #accessibility
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Part Two coming soon! 👀 Earlier this month we sat down with Paralympian Sofie Skoubo to discuss her rare disease journey from childhood to #Paris2024. Not only is Sofie a two-time Paralympian, but she is also working towards her PhD, researching robots that help make school attendance more accessible for children living with a rare disease! Keep an eye out for this fascinating discussion to learn more about how technology could change the future of our community, and in the meantime, catch up with Part One! All episodes of ‘10 Minutes With’ are available on our website! ▶️ https://lnkd.in/eiaDABqu #Paralympics #sport #RareDiseases #community #research
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Why should you nominate someone for a EURORDIS Black Pearl Award? Because it makes a difference. 🌟 Throwback to Michela Onali, our 2023 Volunteer Awardee, talking to us after the ceremony about why the award meant so much to her and her work advocating for her ultra rare disease community! Do you know someone who deserves recognition for going above and beyond in the name of our community? Nominate them today! #EURORDISAwards2025 👉 https://lnkd.in/ekgU6ccw #community #awards #RareDiseases #HolisticCare #nominate
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Are you looking for ways to make your website, social media and in-person events more inclusive? Do you want to make sure that your #RareDiseaseDay 2025 actions are as accessible as possible? Join Rare Disease Day in exactly one month’s time for their webinar on how you can improve the physical and digital spaces that you manage, featuring insights from accessibility experts and rare disease advocates. Don’t miss this opportunity to engage in meaningful discussion on how we can create a more accessible world together! Register now! ✅ https://lnkd.in/ej3EP6K6 #RDD2025 #RDD #webinar #disability #accessibility
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