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.

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Take part in the EURORDIS Photo Award 2021 and be in the chance of winning: 🥇1st Prize: GoPro Hero 9🥈2nd Prize: Drone🥉3r...
24/12/2020

Take part in the EURORDIS Photo Award 2021 and be in the chance of winning:

🥇1st Prize: GoPro Hero 9
🥈2nd Prize: Drone
🥉3rd Prize: Mini projector

#EURORDISAwards2021

Submit your pictures NOW: https://blackpearl.eurordis.org/photo-award/

A mature European Reference Network (#ERN) system will leave no person living with a #raredisease in uncertainty regardi...
23/12/2020

A mature European Reference Network (#ERN) system will leave no person living with a #raredisease in uncertainty regarding their diagnosis, care and treatment.

🔹Read our 33 recommendations: https://www.eurordis.org/maturevisionern

22/12/2020

EURORDIS is involved in the European Project HTx, to explore new ways of assessing personalised treatment pathways 🤳

In this project we'll explore how our health system will be functioning in the future.

👉https://www.htx-h2020.eu/

Register before the 31st December to the online RE(ACT) Congress & #IRDiRC Conference (13-15 January) on #RareDiseases a...
21/12/2020

Register before the 31st December to the online RE(ACT) Congress & #IRDiRC Conference (13-15 January) on #RareDiseases and you might get a discount!

📝 Register NOW: https://registration.solutions/react-2021/

The winter holidays are nearly here!🎄Do you want to show us how you are spending the time with your family and friends? ...
21/12/2020

The winter holidays are nearly here!🎄

Do you want to show us how you are spending the time with your family and friends?

📸 Submit your photo to the #EURORDISAwards2021 https://blackpearl.eurordis.org/photo-award/

Today we launch our recommendations for European Reference Networks by 2030!🇪🇺Our vision is for a mature ERN system that...
16/12/2020

Today we launch our recommendations for European Reference Networks by 2030!🇪🇺

Our vision is for a mature ERN system that leaves no person with a #raredisease in uncertainty regarding their diagnosis, care & treatment.

Read the paper here 👉 https://www.eurordis.org/maturevisionern

BREXIT new deadline is approaching and a 'no deal' would diminish our ability to provide the best care for the millions ...
15/12/2020

BREXIT new deadline is approaching and a 'no deal' would diminish our ability to provide the best care for the millions of people living with a rare disease in the UK 🇬🇧 and the EU 🇪🇺 https://lnkd.in/dBhc6Ae

Read the letter published in The Lancet

Universal Health Coverage is a human right.People living with a #RareDisease have specific medical & social needs. They ...
12/12/2020

Universal Health Coverage is a human right.

People living with a #RareDisease have specific medical & social needs. They must be fully included in #UHC programmes #UHC4RareDiseases

Advocate for a UHC inclusive of rare diseases using our toolkit 👉https://www.eurordis.org/es/uhc4rarediseases

🔴 Live NOW #EMAPublicMeeting Public @EMA_News stakeholder meeting on the development and authorisation of safe and effec...
11/12/2020
EMA Public stakeholder meeting on pandemic vaccines

🔴 Live NOW #EMAPublicMeeting

Public @EMA_News stakeholder meeting on the development and authorisation of safe and effective #COVID19vaccines in the EU 🇪🇺

François Houÿez, from EURORDIS, is one of the speakers

Follow it here 👇
https://www.youtube.com/watch?v=mjyiSMvbIOI&feature=emb_title&ab_channel=emainfo

For more information visit our website: https://www.ema.europa.eu/en/events/public-stakeholder-meeting-development-authorisation-safe-effective-covid-19-vacc...

An inclusive #EU4Health Programme with the involvement of civil society will better meet the needs of people in Europe 🇪...
10/12/2020

An inclusive #EU4Health Programme with the involvement of civil society will better meet the needs of people in Europe 🇪🇺

👉 Read our letter: https://bit.ly/2LiKbpn #EU4HealthCSA

10/12/2020

Today is #HumanRightsDay

Help us rebuild a more inclusive, resilient and sustainable future for people living with a rare disease!

#StandUp4HumanRights #RecoverBetter

👉https://www.eurordis.org/uhc4rarediseases

What are the challenges and solutions for improving patient access to advanced therapeutic medicinal products at a Europ...
07/12/2020

What are the challenges and solutions for improving patient access to advanced therapeutic medicinal products at a European level? 🇪🇺

The results of the #RareImpact report are online!

👉Download the report: https://rareimpact.eu/challenges-solutions/european-level

🚨 TAKE PART IN OUR NEW SURVEY! 🧑‍⚕️How could your care be improved within the next 10 years?🧑‍💻Are you willing to use e-...
04/12/2020

🚨 TAKE PART IN OUR NEW SURVEY!

🧑‍⚕️How could your care be improved within the next 10 years?
🧑‍💻Are you willing to use e-consultations more often?

Share your views via the joint #RareBarometer and Rare 2030 survey: tiny.cc/rare2030survey

Join the Manifesto for a European Health Union 🇪🇺!We now need to mobilise for a real European Health Union that ensures ...
04/12/2020

Join the Manifesto for a European Health Union 🇪🇺!

We now need to mobilise for a real European Health Union that ensures high quality, equitable and accessible health care across the EU.

📝Sign the manifesto NOW: https://europeanhealthunion.eu/

Pre-training for the Winter School has already started!🧑26 patient advocates🌍from 16 countries🌀representing over 20 #rar...
04/12/2020

Pre-training for the Winter School has already started!

🧑26 patient advocates
🌍from 16 countries
🌀representing over 20 #rarediseases

Intensive training: 12-16 April 2021 📆

Not joining this year? e-learning courses available online: https://openacademy.eurordis.org/winterschool/

#COVID19 has increased the many challenges faced by people living with a  #raredisease. 🦠How has the pandemic changed yo...
03/12/2020

#COVID19 has increased the many challenges faced by people living with a #raredisease.

🦠How has the pandemic changed your life?
➰Have you had to overcome any new obstacles?

Submit a photo to the #EURORDISAwards2021 that represents these new challenges!

👉https://blackpearl.eurordis.org/photo-award/

‘You give us the strength to find cures' 🥊Follow the Téléthon live event on Friday and Saturday 4-5 December 👉 http://ww...
02/12/2020

‘You give us the strength to find cures' 🥊

Follow the Téléthon live event on Friday and Saturday 4-5 December

👉 http://www.afm-telethon.com/

SAVE THE DATE : The BLACKSWAN Foundation, @IRDiRC, and EJPRD are hosting the online IRDiRC Conference & REACT Community ...
01/12/2020

SAVE THE DATE : The BLACKSWAN Foundation, @IRDiRC, and EJPRD are hosting the online IRDiRC Conference & REACT Community Congress on 13-15 January, bringing together scientific leaders, #patients and policy makers to advance #research on #rarediseases.

📝 Register here : https://registration.solutions/react-2021/

We are excited to officially launch Rare Disease Day 2021. Meet Tristan, Angelina, Regina, Syafiq, Jon-Kristian and Harv...
28/11/2020

We are excited to officially launch Rare Disease Day 2021.

Meet Tristan, Angelina, Regina, Syafiq, Jon-Kristian and Harvey. They represent the diversity of the over 300 million people living with a rare disease worldwide.

It’s 3 months until #RareDiseaseDay.
How are YOU getting ready?

👉RareDiseaseDay.org

26/11/2020

The RE(ACT) Congress and IRDiRC Conference go fully online in 2021!

This event will bring together scientific leaders and experts and young scientists to advance policy and research on #RareDiseases.

📅13-15 January 2021
🧑‍💻 Online
Register here: https://www.react-congress.org/attendees/registration-2/

What are the challenges and solutions for improving patient access to advanced medicinal products at the European level?...
18/11/2020

What are the challenges and solutions for improving patient access to advanced medicinal products at the European level? 🤔

🔴 Follow LIVE the launch of the #RareImpact report!

📅 Monday 23 November from 14:00 to 16:00, CET.
👉 Register here: https://us02web.zoom.us/webinar/register/WN_0THyzz6gRD-tH6eT420XEA

📢 Are you a patient advocate in the field of rare cancer?🧑‍🎓Do you want to build your skills in policy, patient care or ...
17/11/2020

📢 Are you a patient advocate in the field of rare cancer?
🧑‍🎓Do you want to build your skills in policy, patient care or research?

Have a look at the WECAN - Workgroup of European Cancer Patient Advocacy Networks Academy and expand your knowledge by having access to more than 15 pieces of training!

👉 https://wecanadvocate.eu/academy/

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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
It is not just in Saint Patricks that the World Shines in Green, On 22 October lets Light up the world of Green to show support and solidarity for all affected by Phelan-McDermid Syndrome (pmsf.org). If you know the right person on Eiffel Tower, Niagara falls, or other world monument or your town council, let them know that we need HOPE for these and other special children.
Article about Alternating Hemiplegia of Childhood (AHC) in the Autumn 2020 Edition of RARE Revolution entirely dedicated to rare and complex epilepsies
Hi there. First, let me say thank you for including me. If you have never known anyone in need of an organ transplant to live, then it may be hard to relate. But for us, this is an every day wait for a liver transplant for my husband who has late stage cirrhosis from PSC (Primary Sclerosing Cholangitis), a rare autoimmune disorder. Since our country has an "Opt-In" organ donor system (meaning that you have to indicate informed consent on your driver's license or donor registry), the United States has far less people willing to donate their organs should they be eligible leading to a long waitlist where many people die before getting an organ. By the way, the chances of being an actual donor are very slim. Since we can't even get people to consider others by wearing a mask during a pandemic, I doubt the U.S. will ever switch to a system like Singapore, where not only do they have "presumed consent" but if you decide to "opt out" then if YOU ever need an organ, you will be placed at a lower priority. This makes sense. You receive when you are willing to give. While I alone cannot change an entire system, I am doing everything I can to amend the liver transplant scoring system (called MELD score) so that people with my husband's rare autoimmune disease can get to a higher priority on the waitlist before developing life threatening complications. Thank you for reading, signing, and sharing!
Hello, I'm hoping this isn't against page rules. This is my Mom, she is suffering from FMD, fiber muscular dysplasia. Her organs are starting to shut down, and it's also affected her pathways in her brain, and we are trying to find relief, it's not a curable as of yet, and little can be done for her condition. It's a rare genetic European disease, that attacks the main arteries, blocking blood to flow to main organs. She believes this treatment could help, and also, for anyone that hasn't heard of this, it maybe worth checking into. Also, anyone willing to share her page or help with anything, it's appreciated. Thank you for reading, and blessings to all of you.
Today is #WorldSclerodermaDay 🤩 HAPPY #WSD2020 😍 #SclerodermaAwarenessMonth #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #RareDisease #autoimmune #LifeChanging #systemicsclerosis #Scleroderma #Raynauds Order your #SclerodermaFreeWorld #RaynaudsFreeWorld awareness tshirt here: https://www.royalfreecharity.org/events/view/scleroderma-awareness 2020 - Celebrating 25 years of the Scleroderma Unit @The Royal Free London NHS Foundation Trust Eternally grateful to Prof Dame Carol Black, Prof Chris Denton, Dr Kevin Howell and AHP's. Alternatively, to make a donation to life saving medical research at the scleroderma unit: https://www.royalfreecharity.org/donate/scleroderma-raynauds Read more about research at the scleroderma unit: https://www.royalfreecharity.org/do/research-and-grants https://blog.raynaudsscleroderma.co.uk/ Follow / subscribe @SclerodermaRF Facebook, Twitter, Instagram, Blogger, You Tube @Royal Free Charity Add #SclerodermaFreeWorld Thank You Twibbon to your profiles: https://twibbon.com/Support/sclerodermafreeworld
You have heard that patient data is the next patient advocacy battle! You have heard of FAIR DATA principles (Findable, Accessible, Interoperable, and Reusable) but do you know how important it is for our patients and POs? Join us in FAIR DATA 101 and find out how FAIR can benefit our patient evidence-based advocacy! https://www.share4rare.org/news/share4rare-webinar-fairness-data-rare-diseases Register Now! http://eepurl.com/g4XFpv
A mutual friend suggested that I post this here for your UK members: Hi everyone, I wanted to introduce my perfect 3 year old grandson, Logan. He loved dinosaurs more than anything and loved to roar with them. He loved water, and splashing stones into it. He loved story time & tv. And we love him Perfect....except the very rare type of tumour in his brain called DIPG. We had never heard of it either when he was diagnosed shortly before his 3rd birthday. He died 11 months later (exceeding the "average" survival time of just 9 months by a few weeks). DIPG has 0% survival rate & fatal on diagnosis yet no Government funding is given to this rare type of cancer. As adults we need to be a voice for our children and grandchildren. There is a current petition for more research but Parliament will only act if it reaches 100K signatures! It currently has just over 42K so really needs a big push and your support. It takes 2 minutes to sign and can help children currently battling and those that have lost their lives to this cruel, cruel disease. Surely more than 100k people care about kids with cancer? As Facebook limits the use of petition links I would kindly ask you all (as many people who see this post) to google ‘UK petition childhood cancer 300027’, sign (please check your junk folder if you don't promptly get the email to verify your signature & click on the link they email to you) and then share 🙏 If you do anything today please please sign this petition. Lots of love Logan's gran x
Hi everyone! My name is Gabrielle Sarlo and I am a doctoral student in the Nutritional Neuroscience Lab at American University. We are conducting a survey on parent perspectives on dietary therapy for pediatric epilepsy. We are hoping to get as many responses as possible in the next week. For access to our survey and information on our upcoming clinical trial, please follow our website link: https://www.american.edu/cas/health/nutrneurolab/studies.cfm Thanks for your time!
Our breakout session photo! The work continues! #ECRD2020 #EuroHSP #Eurordis The 10th European Conference on Rare Diseases & Orphan Products Online on 14-15 Mah 2020
Hi all. I'm a Doctor currently doing an MBA in Healthcare and Innovation. I am investigating building an application targeted at rare diseases. I would appreciate it if doctors in the group could give me some insights into their experiences. Your input and feedback on this subject would be greatly appreciated. Please private message me. Thanks