What do you know about the new EU Regulation on Health Technology Assessment (HTA)? 😵💫 There are still limited placements available for the EUCAPA Fast-Track and Extended Training Programmes beginning in September and October! Get ready for the implementation of the new regulation next January by joining us online for the Fast-track training or in Tirol, Austria, for the Extended Training. Learn more 👉 https://lnkd.in/eF85N_ZN #training #PatientAdvocacy #HealthTechnologyAssessment #HTA #project #partners #EUCAPA
EURORDIS-Rare Diseases Europe
Organisations à but non lucratif
Paris, Paris 21 343 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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Back-to-school season is upon us! 🎒 Whether you’re a student living with a rare disease or the parent of a child living with a rare disease, this can be a stressful time. By sharing your voice in the #RareBarometer survey, you can contribute to important research that will influence rare disease policy and improve quality of life for people living with rare diseases, in the classroom and beyond! Less than one week left to take the survey! 🗣️https://lnkd.in/g_Di3Dvm #BackToSchool #RareDisease #RareBarometer
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September is Newborn Screening Awareness Month! 👶 #NBS NBS is important to people living with a rare disease and their families because for approximately 70% of rare diseases the onset occurs during childhood, but do not appear until months following birth. To raise awareness of the crucial importance of NBS to our community, we will be diving into the findings of the 2024 #RareBarometer survey on the opinion of people living with a rare disease on newborn screening! 👀 Stay tuned and in the meantime, learn more about the actions we are taking to advocate for expanded, harmonised NBS programmes across Europe: https://lnkd.in/dNTVU5ct #RareDiseases #NewbornScreening #survey #NewbornScreeningAwarenessMonth
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It is essential to develop drugs that meet the needs of children, young people, and their families. It is therefore crucial for children and their parents to be involved in the development and conduct of studies. In this new article, published as a chapter within “Essentials of Translational Pediatric Drug Development”, our Patient Engagement & Therapeutic Development Director, Maria Cavaller Bellaubi, and Public Affairs Senior Manager, Ariane Weinman, analyse parent's and children's perspectives on how the future of paediatric drug research and development could be improved for the maximum benefit of the paediatric population. 📚 Read the full chapter: https://bit.ly/ETPDD_ch3 #RareDiseases #research #DrugDevelopment #publication
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EURORDIS-Rare Diseases Europe a republié ceci
🔎 Today, a close look at one of our founding member: EURORDIS-Rare Diseases Europe that is shaping research ecosystem for many years through advocacy, training, etc, and continues to do so with their involvement in our coalition of the Rare Disease Moonshot to building a trustful and collaborative research environment to speed up public-private partnerships for the ultimate benefit of patients. https://lnkd.in/dT7ChSQG Thank you to the authors for this very informative paper Maria Cavaller Bellaubi Virginie HIVERT Roseline Favresse Yann Le Cam International Rare Diseases Research Consortium (IRDiRC)
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Forgotten to submit your #EURORDISAwards2025 nominations? Today is your lucky day! 😏 The deadline has been extended to give you an extra 2 weeks to submit the star of your rare disease community for the EURORDIS Black Pearl Awards 2025! There are 10 categories up for grabs this year, each honouring the people or organisations striving to bring about change for the 30 million people living with a disease in Europe. Don’t miss the chance to put someone worthy forward for the recognition they deserve! 🚨 Deadline: 12 September, 2024 👉 https://lnkd.in/ekgU6ccw #community #awards #RareDiseases #NominateNow
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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
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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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