EURORDIS - European Rare Diseases Organisation

EURORDIS - European Rare Diseases Organisation An alliance of over 800 rare disease patient organisations working together to improve the lives of the 30m people living with a rare disease in Europe.

According to a recent #RareBarometer survey on data sharing, the majority of rare disease patients want full or near to ...
25/02/2020

According to a recent #RareBarometer survey on data sharing, the majority of rare disease patients want full or near to full control of the data they share. Being in favour of sharing data & calling for more control are not contradictory. Read more http://ow.ly/q23G50ysoCC

Apply now for Association Française du Syndrome de Rett - AFSR international call for research projects on #Rett syndrom...
24/02/2020
Appel à projets 2020

Apply now for Association Française du Syndrome de Rett - AFSR international call for research projects on #Rett syndrome. Deadline 1st March: https://afsr.fr/appel-a-projets-2020/

L’une des principales missions de l’AFSR est de promouvoir et encourager la recherche médicale et scientifique sur le syndrome de Rett. L’AFSR a financé depuis sa création plus d’un million d’euros…

19/02/2020
Jana Popova, Young Patient Advocate Awardee

We caught up with Jana Popova winner of the EURORDIS Young Patient Advocate Award at the #EURORDISAwards2020 yesterday evening on what the award means to her - congratulations Jana!

Yesterday was a great day @europeanparliament! Thank you to all of those who joined us at our #RareDiseaseDay Policy Eve...
19/02/2020

Yesterday was a great day @europeanparliament! Thank you to all of those who joined us at our #RareDiseaseDay Policy Event and to MEPs @tanja.fajon @kympouropoulos @katerina_konecna @tomislav__sokol

Presenting the EURORDIS Awardees 2020 - congratulations to these stars of the #raredisease community! #EURORDISAwards202...
18/02/2020

Presenting the EURORDIS Awardees 2020 - congratulations to these stars of the #raredisease community! #EURORDISAwards2020

#Live from the #EURORDISAwards2020 - the winner of the EURORDIS Photo Award 2020 is.... ‘Zein and his Mom’Hutchinson-Gil...
18/02/2020

#Live from the #EURORDISAwards2020 - the winner of the EURORDIS Photo Award 2020 is.... ‘Zein and his Mom’
Hutchinson-Gilford Progeria Syndrome, Egypt. Swipe right for runners up - Infusion day (2nd place) and Pure Joy (3rd place). Congratulations!

More #RareDiseaseDay activities at the @europeanparliament with the opening of @phil_l_herold exhibition. Opening words ...
18/02/2020

More #RareDiseaseDay activities at the @europeanparliament with the opening of @phil_l_herold exhibition. Opening words from European Commissioner Health & Food Safety Stella Kyriakides and support from many MEPs for #RareDiseaseDay

Swipe right for more photos! @ Europees Parlement in België / Parlement européen en Belgique

Today we relaunch #ParliamentAdvocate4Rare at our policy event co-hosted by MEPs  Tanja Fajon, Stelios Kympouropoulos an...
18/02/2020

Today we relaunch #ParliamentAdvocate4Rare at our policy event co-hosted by MEPs Tanja Fajon, Stelios Kympouropoulos and Frédérique Ries at the European Parliament to mark the occasion of #RareDiseaseDay. Let’s go from pledge to action on rare diseases in Europe! ow.ly/C1MY50ypdSw

#RareDiseaseDay at @europeanparliament Huge support for the #raredisease community at our MEP Briefing this morning
18/02/2020

#RareDiseaseDay at @europeanparliament Huge support for the #raredisease community at our MEP Briefing this morning

We’re kicking off our #RareDiseaseDay 2020 events with an MEP Briefing on rare diseases at the @europeanparliament #Brus...
18/02/2020

We’re kicking off our #RareDiseaseDay 2020 events with an MEP Briefing on rare diseases at the @europeanparliament #Brussels Thank you to MEP @tanja.fajon for hosting. @rarediseasedayofficial

Don’t miss the chance to make your voice heard! Have your say on the healthcare you receive for your rare disease via th...
17/02/2020

Don’t miss the chance to make your voice heard! Have your say on the healthcare you receive for your rare disease via the #RareBarometer H-CARE Survey available in 23 languages. Survey closes on 29 February: tiny.cc/h-care

Calling all young rare disease patient advocates! Apply now to take part in the Rare2030 - Foresight in Rare Disease Pol...
12/02/2020

Calling all young rare disease patient advocates!

Apply now to take part in the Rare2030 - Foresight in Rare Disease Policy Young Citizen Conference (7-8 July in Barcelona) and be part of a new generation of rare disease policy makers! Deadline 21 February: https://ec.europa.eu/eusurvey/runner/Rare2030YoungCitizenConference

Apply now to take part in the Rare 2030 Young Citizen Conference (7-8 July, Barcelona) and be part of a new generation of rare disease policy makers!

If you are 18-30 years old w/ an interest shaping the future of rare disease policy apply by 21 February http://ow.ly/WYwM50yjwey

Watch live! On 18 February the EURORDIS Black Pearl Awards ceremony takes place to honour the outstanding achievements o...
12/02/2020

Watch live! On 18 February the EURORDIS Black Pearl Awards ceremony takes place to honour the outstanding achievements of the rare disease community. Watch the livestream from 9pm CET at https://blackpearl.eurordis.org/live/ #EURORDISAwards2020

Debra Austria - Schmetterlingskinder ALAN - Maladies Rares Luxembourg Magda Hueckel Alliance Maladies Rares Radiorg.be Uniamo Federazione Italiana Malattie Rare onlus Pro Rare Austria Federación Española de Enfermedades Raras

Good news for the #Gaucher patient community. International Gaucher Alliance & Kantar will work together on a global neu...
11/02/2020

Good news for the #Gaucher patient community.
International Gaucher Alliance & Kantar will work together on a global neuronopathic Gaucher disease patient registry. https://gaucheralliance.org/gb/news_events/international_gaucher_alliance_and_kantar_partnership_announcement

The International Gaucher Alliance (IGA) today announced it has entered into a Letter of Intent with Kantar, to manage the day to day running of the IGA’s global neuronopathic Gaucher disease patient registry.

The registry will support a better understanding of the natural history of the disease, correlate global phenotypes and genotypes, validate new endpoints/outcomes and generate a data source that can be used for both Regulatory and Health Technology Assessments evaluation of emerging drugs for neuronopathic Gaucher disease.

For the full press release please visit http://bit.ly/nGDKantar

#gaucher #patient #registry

Last chance - deadline extended to submit a poster abstract for #ECRD2020 until Friday 14 February. Submit an abstract o...
11/02/2020

Last chance - deadline extended to submit a poster abstract for #ECRD2020 until Friday 14 February. Submit an abstract of your research or studies on one of 8 themes relating to #raredisease: https://www.rare-diseases.eu/posters/

The #EURORDISAwards2020 recognise Dr. Vytenis Andriukaitis outstanding work and support of the rare disease community in...
10/02/2020

The #EURORDISAwards2020 recognise Dr. Vytenis Andriukaitis outstanding work and support of the rare disease community in his role as European Commissioner for Health and Food Safety 2014-2019. Read more about the achievements of this year’s awardees: https://blackpearl.eurordis.org/awardees/

Good news for rare disease patient groups - 30 rare disease patient organisations in the US will receive support from Ch...
07/02/2020

Good news for rare disease patient groups - 30 rare disease patient organisations in the US will receive support from
Chan Zuckerberg Initiative to develop research networks in their disease area. https://chanzuckerberg.com/science/programs-resources/rareasone/network/

7,000 rare diseases, one community fighting for cures. We’re proud to support 30 patient-led organizations in their fight against rare disease: RareAsOne.org
#RareAsOne

To mark the occasion of #RareDiseaseDay 2020 EURORDIS is organising ‘Reframe Rare’ a policy event @Europarl_EN on 18 Feb...
06/02/2020

To mark the occasion of #RareDiseaseDay 2020 EURORDIS is organising ‘Reframe Rare’ a policy event @Europarl_EN on 18 February co-hosted by MEPs Tanja Fajon, Stelios Kympouropoulos and Frédérique Ries. http://ow.ly/gyAX50yeq6k

Results from a recent #RareBarometer survey show that people living with a rare disease are willing to share their healt...
04/02/2020

Results from a recent #RareBarometer survey show that people living with a rare disease are willing to share their health data to foster research or to improve their healthcare. Read more: http://ow.ly/T51450ybBeU

Only one week left to submit your poster abstract for #ECRD2020 for the chance to have your work featured at the largest...
03/02/2020

Only one week left to submit your poster abstract for #ECRD2020 for the chance to have your work featured at the largest, patient-led rare disease event. Find out more about the 8 poster themes: https://www.rare-diseases.eu/

We are honoured to announce #AudreyHepburn as posthumous Honorary Patron of EURORDIS. The late Hollywood actress and hum...
31/01/2020

We are honoured to announce #AudreyHepburn as posthumous Honorary Patron of EURORDIS. The late Hollywood actress and humanitarian passed away from the rare cancer pseudomyxoma peritonei, which affects only one in a million people. http://ow.ly/uEZE50ya32x Intimate Audrey

Check out a podcast series by @whitworth_group about rare diseases, discussing topics such as genome editing and health ...
31/01/2020

Check out a podcast series by @whitworth_group about rare diseases, discussing topics such as genome editing and health care. Listen to the latest episodes: https://rare-d.com/podcasts/

New graphic report showing the results & recommendations from the first international survey on rare disease patient per...
30/01/2020

New graphic report showing the results & recommendations from the first international survey on rare disease patient perspectives on #datasharing and data protection carried out by #RareBarometer. Read more: http://ow.ly/JzrK50y8LR0

Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February! Submit your vote at https://blackpear...
28/01/2020

Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February!

Submit your vote at https://blackpearl.eurordis.org/photo-award/

The winning photo will be announced during the EURORDIS Black Pearl Awards ceremony on 18 February.

#EURORDISAwards2020

Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February!

Submit your vote at https://blackpearl.eurordis.org/photo-award/

The winning photo will be announced during the EURORDIS Black Pearl Awards ceremony on 18 February.

#EURORDISAwards2020

5 weeks to go until #RareDiseaseDay 2020 on 29 February. Check out this press release for the latest information on this...
25/01/2020

5 weeks to go until #RareDiseaseDay 2020 on 29 February. Check out this press release for the latest information on this year’s campaign.
https://download2.eurordis.org/documents/pdf/PressRelease_RareDiseaseDay2020.pdf

Are you conducting research on rare diseases or public health projects? Don't miss the chance to showcase your work at #...
23/01/2020

Are you conducting research on rare diseases or public health projects? Don't miss the chance to showcase your work at #ECRD2020, submit your poster abstract by 10 February: https://www.rare-diseases.eu/posters/

The #ECRD2020 website is now available in French & German! Find all the information you need about the European Conferen...
21/01/2020

The #ECRD2020 website is now available in French & German! Find all the information you need about the European Conference on Rare Diseases & Orphan Products 15-16 May, Stockholm!

Le site web de #ECRD2020 est désormais disponible en français !
>> https://www.rare-diseases.eu/fr/

Die #ECRD2020 Website steht jetzt auch auf Deutsch zur Verfügung!
>> https://www.rare-diseases.eu/de/

Today EURORDIS is meeting with new Health Commissioner @SKyriakidesEU to convey our key recommendations to address the n...
20/01/2020

Today EURORDIS is meeting with new Health Commissioner @SKyriakidesEU to convey our key recommendations to address the needs of rare cancers within Europe’s Beating Cancer Plan. We are proud to advocate for people with rare cancers on #AudreyHepburn anniversary.

Staff at EURORDIS showing their support for #RareDiseaseDay 2020, on 29 February!Take photos with your family, friends a...
20/01/2020

Staff at EURORDIS showing their support for #RareDiseaseDay 2020, on 29 February!

Take photos with your family, friends and colleagues that champion the Rare Disease Day logo and colours and share them with @rarediseaseday on social media!

Staff at EURORDIS showing their support for #RareDiseaseDay 2020, on 29 February!

Take photos with your family, friends and colleagues that champion the Rare Disease Day logo and colours and share them with @rarediseaseday on social media!

Today we remember #AudreyHepburn, Honorary Patron of EURORDIS who passed away from rare cancer pseudomyxoma peritonei on...
20/01/2020

Today we remember #AudreyHepburn, Honorary Patron of EURORDIS who passed away from rare cancer pseudomyxoma peritonei on 20 January 1993. Visit #IntimateAudrey, an exhibition about her life, on until 31 Jan in Amsterdam: https://www.intimateaudrey.org/

20/01/2020
H-Care survey

We want to hear from you! Take the #RareBarometer H-CARE Survey available in 23 languages and have your say on the healthcare you receive for your rare disease: tiny.cc/h-care

EURORDIS & WHO Regional Office for Europe are co-designing new actions to address the challenges of people living with a...
17/01/2020

EURORDIS & WHO Regional Office for Europe are co-designing new actions to address the challenges of people living with a rare disease in Europe at large, including in Central Europe, the Balkans and Russia. Thank you Dr Hans Kluge, Dr Bente Mikkelsen & Dr Sarah Garner

Submit a poster abstract on one of 8 themes relating to rare diseases & orphan products by 10 Feb for the opportunity to...
16/01/2020

Submit a poster abstract on one of 8 themes relating to rare diseases & orphan products by 10 Feb for the opportunity to showcase your research at #ECRD2020 15-16 May in Stockholm. https://www.rare-diseases.eu/posters/

Rare Endo-ERN has launched a survey for people living with endocrine diseases in Europe to identify patients’ unmet need...
15/01/2020

Rare Endo-ERN has launched a survey for people living with endocrine diseases in Europe to identify patients’ unmet needs in medical research. Find out more: http://buff.ly/2QUdfTB

Last chance - submissions for the EURORDIS Photo Award close tomorrow! Enter a photo that captures life with a rare dise...
15/01/2020

Last chance - submissions for the EURORDIS Photo Award close tomorrow! Enter a photo that captures life with a rare disease to the #EURORDISAwards2020. Winning photo announced on 18 Feb: https://blackpearl.eurordis.org/photo-award/

Only 1 week left to submit a photo for the EURORDIS Photo Award! Don’t delay, enter a photo that visually expresses livi...
09/01/2020

Only 1 week left to submit a photo for the EURORDIS Photo Award! Don’t delay, enter a photo that visually expresses living with a rare disease by 16 January. #EURORDISAwards2020 https://blackpearl.eurordis.org/photo-award/

The official #RareDiseaseDay 2020 poster is out now! Download it from rarediseaseday.org/downloads to use in your  workp...
07/01/2020

The official #RareDiseaseDay 2020 poster is out now! Download it from rarediseaseday.org/downloads to use in your workplace, home or at events!

Out now! Download the official poster for #RareDiseaseDay 2020 now available via rarediseaseday.org/downloads. Share it today to show your support for the rare disease community!

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BUONGIORNO, VORREI CORTESEMENTE SAPERE SE IN ITALIA ESISTE UNA ASSOCIAZIONE DI PAZIENTI PER LA SINDROME DI LANGER-GIEDION altrimenti detta sindrome tricorinofalangeale tipo 2. Grazie a chi saprà darmi informazioni.
Happy New Year everyone! Personalize My Medicine is my start-up. It is a personalized research service to help patients to find the information they need. You can help PMM to help more patients by supporting our campaign at GoFundMe. Please go to the link below to see the video, donate and share! Many thanks 🙏 https://www.gofundme.com/f/personalize-my-medicine?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=98f44265e7894969b388399331ada732 #personalize #my #medicine #medical #innovation #personalized #health #research #for #patients @gofundme
For Fragile X awareness "Stuart Iredale was born with Fragile X during the 1950s; a time when the disability was little known. He was misdiagnosed with mental illness and spent 40 years of his life in psychiatric hospitals where he was misunderstood, drugged and abused At 60 years old Stuart was correctly diagnosed with Fragile X. He now has a set of processes and care that provide him with an entirely different quality of life. Today he has shown progress towards recovery from years of mistreatment and responds to music therapy by dancing."
ANNUAL MEETING ON WILSON DISEASE ITALY Sabato 30 novembre presso the Westin palace hotel in Milano. L'iscrizione al convegno è gratuita, inoltre per i più piccoli è previsto un simpatico intrattenimento. Al fine di organizzare al meglio la vostra accoglienza vi preghiamo di iscrivervi attraverso il link qui sotto. https://www.cognitoforms.com/AssociazioneNazionaleMalattiaDiWilson/IscrizioneAll9ConvegnoNazionaleSullaMalattiaDiWilson Vi aspettiamo numerosi.
Il y a quelques années mon frère à failli mourir lorsqu'un hôtel a congelé son médicament par erreur. J’ai donc décidé de lui faire un réfrigérateur portable, beau, facile à utiliser, qui garderait ses médicaments à la bonne température. Et c’est maintenant fait… Après deux années de travail intense, d’aventures, d’erreurs, de colère et de joie, je suis heureux de vous annoncer que LifeinaBox, le plus petit frigo intelligent au monde, est enfin disponible sur www.lifeina.com. Conçu pour n'importe quel médicament fragile, LifeinaBox vous permettra de voyager n’importe où, n’importe quand, avec vos médicaments à la bonne température. Merci pour votre soutien au cours des 2 dernières années. C'est grâce à vous que LifeinaBox existe. Merci de partager #TransportMedicaments #vivezvotrevie #maladiesrares
Hi I'm the admin for the MEF2C medical group. We are looking for people with a mutation on that gene who we are not aware of and who might be interested in a clinical trial. You must have a diagnosis of a mutation on the MEF2C gene. We are trying to reach as many people as possible to make them aware of this. Please either see the latest post here https://www.facebook.com/AsociacionMEF2C/ or ask to join https://www.facebook.com/groups/MEF2CMedical/ and https://www.facebook.com/groups/148387552018909/
Hola! Actualmente estamos realizando un estudio y buscamos padres/cuidadores de niñ@s con Acondroplasia. Se trata de una entrevista telefónica de 60 minutos, y el propósito de este estudio, es revisar unos textos y ver si su comprensión es aceptable. Los participantes que reúnan los requisitos, recibirán 100€ como apreciación por su tiempo. Como muestra de agradecimiento, también ofrecemos 50€ por cada referencia que nos den, y que llegue a completar el estudio al completo. Muchas gracias!
What do you think about it ?
PORTUGAL: On World Rare Diseases Day, take the opportunity to meet @Lovexair and #HappyAir that cares for the quality of life and well-being of tthose affected by chronic diseases. #doencasraraspt. March 10. Beach of Carcavelos, Lisbon. 1pm to 4pm. More information: https://happyair.org/dia-mundial-doencas-raras-portugal/
Hey, Eurordis! Let me hear you across the pond, Say it loud, say it proud, it’s #RareDisease Week! Here’s one 4 #PKU #genetic disorders, need some audience participation! Can you hum & say “oh!” If I can do it, you can too! #ShowYourRare ShowYourStripes 4 lifesaving #nutrition with #medicalfoods #equity, make some noise!