Time is running out! ⏰ Nominations for the EURORDIS Black Pearl Awards 2025 are closing soon. This is your last chance to recognise and celebrate the individuals, organisations, and initiatives making a profound impact in the rare disease community. Don’t miss the opportunity to shine a spotlight on those driving change and improving lives across the world! Submit your nominations today and play a key role in this prestigious event! #EURORDISAwards2025 🏆 Nominate now: https://lnkd.in/ekgU6ccw 🚨 Deadline: 12 September, 2024 #community #awards #RareDiseases #NominateNow
EURORDIS-Rare Diseases Europe
Organisations à but non lucratif
Paris, Paris 21 388 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.
- Seite web
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http://www.eurordis.org
Lien externe pour EURORDIS-Rare Diseases Europe
- Secteur
- Organisations à but non lucratif
- Größe des Unternehmens
- 11-50 employés
- Siège social
- Paris, Paris
- Typ
- Non lucratif
- Fondée en
- 1997
- Domains
- patient empowerment, European networking of patients, advocacy, policy development, orphan drug policy et Rare Diseases
Lieux
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Direktorin
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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Timely and accurate diagnosis is crucial for people living with a rare disease. ⏱️ In this clip from award-winning sitcom “The Golden Girls”, character Dorothy touches on a range of topics including medical gaslighting, the challenges people face whilst living without a diagnosis and the importance of holistic care, including proper mental health support. Early and precise diagnosis opens the door to proper medical care, access to the right treatments, and vital support systems, ultimately improving the quality of life. Furthermore, a correct diagnosis can facilitate early intervention for at-risk family members, allowing current and future generations to live their lives to the fullest! Learn more about the importance of diagnosis, life ‘not yet diagnosed’ vs ‘undiagnosed’, and the actions we are taking to enhance access to timely and accurate diagnosis for all people living with a rare disease: 🤝 https://lnkd.in/efVMaTJT #RareDiseases #diagnosis #GoldenGirls #MentalHealth
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Undiagnosed rare diseases represent a unique, critical, but often neglected, aspect of the rare disease community. For those living with an undiagnosed condition, the absence of a diagnosis often means years of uncertainty, limited access to appropriate care, and a lack of understanding from the medical community. These individuals are an integral part of our community, and it's essential that their needs are recognised and addressed! We’re proud to be a part of UDNI (Undiagnosed Diseases Network International). Starting today, EURORDIS Research & Policy Senior Manager, Gulcin Gumus, will be in attendance at the 13th Conference of the Undiagnosed Diseases Network International. Her presentation will highlight the importance of involving patients and their families in the journey toward finding answers and improving care. By focusing on those still seeking a diagnosis, we can drive meaningful progress in research, healthcare, and support systems, ensuring that no one is left behind. Learn more about the conference 👉 https://lnkd.in/ewXYfasa #RareDiseases #UndiagnosedDiseases #PatientEngagement
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Coinciding with #NewbornScreening Awareness Month, our Research & Policy Senior Manager, Gulcin Gumus, has co-authored a paper on the importance of advocating for timely newborn screening to improve quality of life for the rare disease community. Now officially published in Rare Disease and Orphan Drugs Journal, the publication is the result of a collaborative effort from the International Rare Diseases Research Consortium (IRDiRC) Initiative on Newborn Screening, of which EURORDIS is a member. The paper explores the newborn screening advocacy efforts of six patient organisations worldwide, each representing a national, regional, or disease-specific alliance with unique characteristics. 📚 Read the full article: https://lnkd.in/d35zwr4S #NewbornScreeningAwarenessMonth #advocacy #publication #IRDiRC
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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
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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