EURORDIS - European Rare Diseases Organisation

EURORDIS - European Rare Diseases Organisation An alliance of over 900 rare disease patient organisations working together to improve the lives of the 30m people living with a rare disease in Europe.

Fonctionnement normal

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their huma...
05/07/2021

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their human rights to the fullest?

By adopting a European action plan on rare diseases! Join us in our efforts to move the rare disease agenda forward. #ShareYourReason

https://action.eurordis.org/ #30millionreasons

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their human rights to the fullest?

By adopting a European action plan on rare diseases! Join us in our efforts to move the rare disease agenda forward. #ShareYourReason

https://action.eurordis.org/ #30millionreasons

Living with a rare disease goes hand in hand with confronting challenges. It is critical that we address these challenge...
03/07/2021

Living with a rare disease goes hand in hand with confronting challenges. It is critical that we address these challenges as a human rights, sustainable development and equity priority!

Be sure to connect at 14:00-15:00 CET on Wednesday to a joint webinar of the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS to learn more!

https://us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw

Living with a rare disease goes hand in hand with confronting challenges. It is critical that we address these challenges as a human rights, sustainable development and equity priority!

Be sure to connect at 14:00-15:00 CET on Wednesday to a joint webinar of the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS to learn more!

https://us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw

Who's your star? ⭐️The EURORDIS annual Black Pearl Awards 🏆 are a great opportunity to acknowledge the extraordinary eff...
02/07/2021

Who's your star? ⭐️

The EURORDIS annual Black Pearl Awards 🏆 are a great opportunity to acknowledge the extraordinary efforts of rare disease patient advocates, organisations, scientists, companies or anyone else you admire! Give these heroes the visibility they deserve today!

👉https://blackpearl.eurordis.org/nominate/

Who's your star? ⭐️

The EURORDIS annual Black Pearl Awards 🏆 are a great opportunity to acknowledge the extraordinary efforts of rare disease patient advocates, organisations, scientists, companies or anyone else you admire! Give these heroes the visibility they deserve today!

👉https://blackpearl.eurordis.org/nominate/

The voices of children, young people and families are a pivotal part of the innovative approach of the conect4children p...
30/06/2021

The voices of children, young people and families are a pivotal part of the innovative approach of the conect4children project, which places patients at the centre of the development of clinical trials.

We encourage YOU to join the pool of expert patients. Check your eligibility and apply here: https://conect4children.org/patient-and-public-involvement/

The voices of children, young people and families are a pivotal part of the innovative approach of the conect4children project, which places patients at the centre of the development of clinical trials.

We encourage YOU to join the pool of expert patients. Check your eligibility and apply here: https://conect4children.org/patient-and-public-involvement/

Today is the First International Neonatal Screening Day. In the past 50 years, Newborn Screening has improved millions o...
28/06/2021

Today is the First International Neonatal Screening Day.

In the past 50 years, Newborn Screening has improved millions of children's lives: families are able to plan better for their child’s care and treatment and make informed decisions about future pregnancies.

Yet, there is still much left to be done to guarantee the human right of achieving the highest standard of health for all newborns across Europe. This is why on this day we call for increased collaboration and discussions on Newborn Screening for the well-being of every child and their families.

https://ipopi.org/the-international-neonatal-screening-day-is-born/

Today is the First International Neonatal Screening Day.

In the past 50 years, Newborn Screening has improved millions of children's lives: families are able to plan better for their child’s care and treatment and make informed decisions about future pregnancies.

Yet, there is still much left to be done to guarantee the human right of achieving the highest standard of health for all newborns across Europe. This is why on this day we call for increased collaboration and discussions on Newborn Screening for the well-being of every child and their families.

https://ipopi.org/the-international-neonatal-screening-day-is-born/

Do you know someone who has contributed to the rare disease community?Let the world know about their achievements by ent...
27/06/2021

Do you know someone who has contributed to the rare disease community?

Let the world know about their achievements by entering your nomination for the #EURORDISAwards2022 NOW and help them reach new heights!

👉https://blackpearl.eurordis.org/nominate/

Do you know someone who has contributed to the rare disease community?

Let the world know about their achievements by entering your nomination for the #EURORDISAwards2022 NOW and help them reach new heights!

👉https://blackpearl.eurordis.org/nominate/

Today we say goodbye to the 2021 edition of the #EURORDISSummerSchool. We would like to thank the 33 attendees of the tr...
25/06/2021

Today we say goodbye to the 2021 edition of the #EURORDISSummerSchool. We would like to thank the 33 attendees of the training for their commitment and proactivity in such an intense week.

Thank you also to all the partners who have made this edition possible:

European Joint Programme on Rare Diseases
European Medicines Agency
HTx Project - Next Generation Health Technology Assessment
European Clinical Research Infrastructures Network
Leiden University Medical Center

And for those who didn't attend the Summer School, do not forget to check the free training opportunities available on our website!

👉https://openacademy.eurordis.org/summerschool/

Today we say goodbye to the 2021 edition of the #EURORDISSummerSchool. We would like to thank the 33 attendees of the training for their commitment and proactivity in such an intense week.

Thank you also to all the partners who have made this edition possible:

European Joint Programme on Rare Diseases
European Medicines Agency
HTx Project - Next Generation Health Technology Assessment
European Clinical Research Infrastructures Network
Leiden University Medical Center

And for those who didn't attend the Summer School, do not forget to check the free training opportunities available on our website!

👉https://openacademy.eurordis.org/summerschool/

Are you looking to contact other patients and families that share your disease? There are lots of new patient communitie...
24/06/2021

Are you looking to contact other patients and families that share your disease? There are lots of new patient communities on RareConnect

RareConnect is a safe and easy-to-use platform where rare disease patients, families and patient organisations can create online communities and start conversations across continents and languages. Check them out now! Link: https://www.rareconnect.org/en/

Are you looking to contact other patients and families that share your disease? There are lots of new patient communities on RareConnect

RareConnect is a safe and easy-to-use platform where rare disease patients, families and patient organisations can create online communities and start conversations across continents and languages. Check them out now! Link: https://www.rareconnect.org/en/

Exciting news! ✨ The European Joint Programme on Rare Diseases has launched a new training opportunity. 🔹“Quality assura...
24/06/2021

Exciting news! ✨ The European Joint Programme on Rare Diseases has launched a new training opportunity. 🔹“Quality assurance, variant interpretation and data management in the NGS diagnostics era”

⏳Don't miss out! There are only 30 available places
📅 27-29 Oct
📍 Online

👉https://www.ejprarediseases.org/event/quality-assurance-variant-interpretation-and-data-management-in-the-ngs-diagnostics-era/

Exciting news! ✨ The European Joint Programme on Rare Diseases has launched a new training opportunity. 🔹“Quality assurance, variant interpretation and data management in the NGS diagnostics era”

⏳Don't miss out! There are only 30 available places
📅 27-29 Oct
📍 Online

👉https://www.ejprarediseases.org/event/quality-assurance-variant-interpretation-and-data-management-in-the-ngs-diagnostics-era/

The EURORDIS Summer School is global! 🌍This week 2️⃣6️⃣ patient advocates and 7 researchers, from 19 countries, represen...
23/06/2021

The EURORDIS Summer School is global! 🌍This week 2️⃣6️⃣ patient advocates and 7 researchers, from 19 countries, representing over 19 rare diseases are meeting online to become experts in medicines research and development and covering topics such as clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

Learn more here: https://openacademy.eurordis.org/summerschool/
#EURORDISSummerSchool

The EURORDIS Summer School is global! 🌍This week 2️⃣6️⃣ patient advocates and 7 researchers, from 19 countries, representing over 19 rare diseases are meeting online to become experts in medicines research and development and covering topics such as clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

Learn more here: https://openacademy.eurordis.org/summerschool/
#EURORDISSummerSchool

Why do we need European action on rare diseases?🌍Updated European legislation🛑to stop people losing their lives too youn...
18/06/2021

Why do we need European action on rare diseases?
🌍Updated European legislation
🛑to stop people losing their lives too young from rare diseases,
📈improve their quality of life,
🏆and position Europe as a global leader in rare disease innovation.

You have a role to play! Learn how you can contribute 👉https://www.eurordis.org/30millionreasons

Ever thought about upgrading your digital skills? 📱 Take a look at over 3 hours of FREE online training, prepared just f...
17/06/2021

Ever thought about upgrading your digital skills? 📱 Take a look at over 3 hours of FREE online training, prepared just for you! Take your social media to the next level today and improve the strategic outreach and community-building capacities of your organisation!

👉https://openacademy.eurordis.org/digitalschool/

Ever thought about upgrading your digital skills? 📱 Take a look at over 3 hours of FREE online training, prepared just for you! Take your social media to the next level today and improve the strategic outreach and community-building capacities of your organisation!

👉https://openacademy.eurordis.org/digitalschool/

A few minutes of your time can make a huge difference for another person, a child, man or woman living with a rare condi...
16/06/2021

A few minutes of your time can make a huge difference for another person, a child, man or woman living with a rare condition who might be feeling alone or isolated in these challenging times.

Show your support for the rare disease community and let UN policy makers know that you care. Collectively, we can move towards a new reality where everyone is treated with respect and understanding.

Join #Resolution4Rare https://www.rarediseasesinternational.org/dearun/

A few minutes of your time can make a huge difference for another person, a child, man or woman living with a rare condition who might be feeling alone or isolated in these challenging times.

Show your support for the rare disease community and let UN policy makers know that you care. Collectively, we can move towards a new reality where everyone is treated with respect and understanding.

Join #Resolution4Rare https://www.rarediseasesinternational.org/dearun/

Identifying conditions at birth can improve a child's health and well-being and enable them to reach their full potentia...
15/06/2021

Identifying conditions at birth can improve a child's health and well-being and enable them to reach their full potential.

Many parents are unaware of the conditions that are included in their national Newborn Screening (NBS) programmes, which can vary from one country to another. Our latest publication on Newborn Screening outlines 11 key principles to help you in your NBS advocacy at the local, national and European level 👉https://www.eurordis.org/newbornscreening

Now available in 🇬🇧🇬🇪🇩🇪🇮🇹🇲🇰🇵🇱🇸🇮

Please reach out to [email protected] if you would like to translate the position paper into your language.

Identifying conditions at birth can improve a child's health and well-being and enable them to reach their full potential.

Many parents are unaware of the conditions that are included in their national Newborn Screening (NBS) programmes, which can vary from one country to another. Our latest publication on Newborn Screening outlines 11 key principles to help you in your NBS advocacy at the local, national and European level 👉https://www.eurordis.org/newbornscreening

Now available in 🇬🇧🇬🇪🇩🇪🇮🇹🇲🇰🇵🇱🇸🇮

Please reach out to [email protected] if you would like to translate the position paper into your language.

Now is the time for more answers than questions. Rare diseases need to be prioritised along the whole chain of health ca...
14/06/2021

Now is the time for more answers than questions. Rare diseases need to be prioritised along the whole chain of health care.

Why do rare diseases matter? 📢 #ShareYourReason for a European action plan to ensure that the 30 million people living with a rare disease are treated equally as other citizens.

https://action.eurordis.org/ #30millionreasons

Now is the time for more answers than questions. Rare diseases need to be prioritised along the whole chain of health care.

Why do rare diseases matter? 📢 #ShareYourReason for a European action plan to ensure that the 30 million people living with a rare disease are treated equally as other citizens.

https://action.eurordis.org/ #30millionreasons

Patient advocates📣Researchers👩‍🔬Organisations 🏬Do you know anyone in the above-mentioned categories who might be an insp...
13/06/2021

Patient advocates📣
Researchers👩‍🔬
Organisations 🏬

Do you know anyone in the above-mentioned categories who might be an inspiration for people living with a rare disease?

Nominate them to be the next awardees of the #EURORDISAwards2022 👉https://blackpearl.eurordis.org/nominate/

Patient advocates📣
Researchers👩‍🔬
Organisations 🏬

Do you know anyone in the above-mentioned categories who might be an inspiration for people living with a rare disease?

Nominate them to be the next awardees of the #EURORDISAwards2022 👉https://blackpearl.eurordis.org/nominate/

🦺Personal safety (72%) 🧑‍⚕️Timely access to health care professionals (56%)🧠Mental well-being (53%)These were the main p...
12/06/2021

🦺Personal safety (72%)
🧑‍⚕️Timely access to health care professionals (56%)
🧠Mental well-being (53%)

These were the main patients' concerns in Europe during the COVID-19 crisis, according to the EPF Survey. Do you want to better understand how the pandemic impacted all sorts of patients in Europe? Check the full results of the survey!https://www.eu-patient.eu/globalassets/impact-of-covid-19-on-patients--pos.pdf

🦺Personal safety (72%)
🧑‍⚕️Timely access to health care professionals (56%)
🧠Mental well-being (53%)

These were the main patients' concerns in Europe during the COVID-19 crisis, according to the EPF Survey. Do you want to better understand how the pandemic impacted all sorts of patients in Europe? Check the full results of the survey!https://www.eu-patient.eu/globalassets/impact-of-covid-19-on-patients--pos.pdf

11/06/2021

How do health care systems 🏥 decide on the best treatments and which are worth paying for?

Learn more about Health Technology Assessment! 👇👇

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their huma...
10/06/2021

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their human rights to the fullest?

By adopting a new EU Action Plan on Rare Diseases! Join us in our efforts to move the rare disease agenda forward #30millionreasons

https://action.eurordis.org

How can we ensure that everyone, including the 30 million people living with a rare disease in Europe, enjoys their human rights to the fullest?

By adopting a new EU Action Plan on Rare Diseases! Join us in our efforts to move the rare disease agenda forward #30millionreasons

https://action.eurordis.org

Your testimony 📜 can help policy makers understand and empathise with the challenges faced by people living with a rare ...
08/06/2021

Your testimony 📜 can help policy makers understand and empathise with the challenges faced by people living with a rare disease.

📣Take part in the Rare Disease international 'Dear UN' campaign and make your voice count! https://www.rarediseasesinternational.org/dearun/

Your testimony 📜 can help policy makers understand and empathise with the challenges faced by people living with a rare disease.

📣Take part in the Rare Disease international 'Dear UN' campaign and make your voice count! https://www.rarediseasesinternational.org/dearun/

The patient journey infographic is already available in 2⃣4⃣ European languages! 🇬🇧🇩🇪🇳🇱🇹🇷🇫🇷🇨🇿🇪🇸🇮🇹🇵🇹🇸🇪🇧🇬🇷🇴🇮🇸🇭🇺🇸🇰 🇷🇸🇬🇪🇵🇱🇱🇹...
07/06/2021
EURORDIS - The Voice of Rare Disease Patients in Europe

The patient journey infographic is already available in 2⃣4⃣ European languages!

🇬🇧🇩🇪🇳🇱🇹🇷🇫🇷🇨🇿
🇪🇸🇮🇹🇵🇹🇸🇪🇧🇬🇷🇴
🇮🇸🇭🇺🇸🇰 🇷🇸🇬🇪🇵🇱
🇱🇹🇲🇰🇷🇺🇺🇦🇩🇰🇬🇷

👉Contribute to the publication by translating it into your language! https://www.eurordis.org/publication/diagnosisjourneyinfographic

Solve-RD - solving the unsolved rare diseases is a research project funded by the European Commission, aiming to solve large numbers of rare diseases for which a molecular cause is not known yet.  To date, the Solve-RD Project is analysing 8,463 datasets (8,152 whole exome sequencing and 311 whole...

06/06/2021
Access to COVID-19 Vaccines, with François Houyez and Yann Le Cam

How many doses of the COVID-19 vaccine are necessary?
Will you need a third booster dose?
When will children be vaccinated against COVID-19?

Learn more about the rollout of #COVID19Vaccines, the COVAX initiative and major issues affecting the supply and use of COVID-19 vaccines worldwide in this short interview with our CEO and our top vaccine expert.

The rare disease community shared their top 3⃣ highest unmet needs to be addressed by 2030:💊Accessible and affordable tr...
05/06/2021

The rare disease community shared their top 3⃣ highest unmet needs to be addressed by 2030:

💊Accessible and affordable treatments and therapies
🧑‍⚕️Better coordination between all healthcare professionals
🥼Improved access to specialists in their disease

#ShareYourReason for a new EU action plan for rare diseases to improve the lives of people living with a rare disease in the next 10 years. https://action.eurordis.org/ #30millionreasons

The rare disease community shared their top 3⃣ highest unmet needs to be addressed by 2030:

💊Accessible and affordable treatments and therapies
🧑‍⚕️Better coordination between all healthcare professionals
🥼Improved access to specialists in their disease

#ShareYourReason for a new EU action plan for rare diseases to improve the lives of people living with a rare disease in the next 10 years. https://action.eurordis.org/ #30millionreasons

Adresse

96 Rue Didot
Paris
75014

Téléphone

01 56 53 52 10

Site Web

Produits

rareconnect.org
https://www.rarediseaseday.org/shop#!/

Notifications

Soyez le premier à savoir et laissez-nous vous envoyer un courriel lorsque EURORDIS - European Rare Diseases Organisation publie des nouvelles et des promotions. Votre adresse e-mail ne sera pas utilisée à d'autres fins, et vous pouvez vous désabonner à tout moment.

Contacter L'entreprise

Envoyer un message à EURORDIS - European Rare Diseases Organisation:

Vidéos

Organisations à But Non Lucratifss á proximité


Autres Organisation à but non lucratif à Paris

Voir Toutes

Commentaires

https://fb.watch/5OfSq8mDrb/ Les mando mi presentación para que lo veas y lo goces muchísimo saludos
May 24th - May 31st is PSP & CBD Awareness Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare progressive neurological diseases which have no effective treatment and no cure. Please share to help raise awareness. #PSPitsNotaGame #PSP_ProgressiveSupranuclearPalsy
May 24th - May 31st is PSP & CBD Awareness Week Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare progressive neurological diseases which have no effective treatment and no cure. Please share to help raise awareness. #CBD_CruelBrainDisease #CBD_CorticoBasalDegeneration
Help us to share our knowledge about the disease . Amyloidosis Alliance 💪🏻
You are doing great work!
Venerdì 2 aprile 2021 alle ore 17.00, in occasione della Giornata Mondiale per la consapevolezza sull’autismo, per "Le interviste di InfoHandicap", sulla pagina FB di InfoHandicap, avremo ospiti Elena Bulfone, Presidente Fondazione Progettoautismo FVG e Erica Cecotti, Psicologa e Psicoterapeuta, SOC Area Welfare di Comunità e Dirigente ASUGI. https://www.facebook.com/events/463152624798703/
Hello Everyone! I'm Sofia Pratesi, a student at the University of Trento and I'm doing research on the topic of travelling with motor disabilities. I need your help to finish my research so I kindly ask you to complete the online questionnaire form that I attached below. There are only a few questions and It will take you only a few minutes of your time. Thank you to all of them that will decide to fill it😃
Knowing Mr leo henry has been a blessing to Me, my family and friends, there's no disputing the fact that he is the best account manager ever. I just made another withdrawal few moments ago, it was so great this is really an opportunity knowing you wow friends I can't be so selfish enough to enjoy this blessing alone you can always contact him directly so he can help you too. He is ready to show you how you can trade and make profit, I'm a living testimony I invested $1000 and I got my profit today after 7 days trade I made a withdrawals of 13,600 as my profit in return wow I'm so happy believe me friends it works 100%. try him and see the blessing. You can reach him via Email on [email protected] WhatsApp Number :+13103614712 Success doesn’t come to you, You go to it... I’m not the one to call you to invest and have a bright financial situation. If you know what’s right, you’re supposed to contact him now and start trading ASAP"
4th International meeting on #p63gene and #eecsyndrome (English language) FREE PARTECIPATION: 26 November 2020 - h. 10:30 - 12:30 1° Webinar: SCIENTIFIC RESEARCH - GENETICS - GOOD PRACTICES h. 14:30-16:30 2° Webinar: SKIN - EYES - ORPHAN DRUG h. 16:30 - 17:30 3° Webinar: SURGERY AND ORTHODONTICS LIVE: 27 November 2020: h. 10:00 - 12:30 LA PERSONA AL CENTRO! The person with rare disease - Veneto - Italy - Europe Italian Language Click here to apply https://docs.google.com/.../1FAIpQLSfi0NQYFEF7gH.../viewform Info and registration: [email protected] To download the congress programme scan the QR code! #ricercaeconfronti2020 #p63sindromeeecinternationalonlus