2021 Paris

Important announcement / Annonce importante

The Ehlers-Danlos Society European Learning Conference, Paris—Postponed until April 24-25, 2021  / Notre conference à Paris est annulé et reportée au 24-25 Avril, 2021.

The wellbeing of our participants and community is our top priority. Due to continued uncertainty and travel restrictions with COVID-19 [Coronavirus], The Society has decided to postpone our European Learning Conference and HEDGE study screening in Paris, France, which was due to take place November 7-8, 2020.

We have rescheduled both the conference for April 24-25, 2021. April 24, 2021, will be health professionals day (in place of November 7) and April 25, 2021, will be community day for patients, their families, and caregivers (in place of November 8).

Full event, FAQs, and contact information can be found below. For information on COVID-19 click here. 

For those who have questions regarding the HEDGE study please click here. The planned HEDGE screening is currently being reviewed and individuals who had a confirmed appointment will be contacted by email directly once finalized.


La santé de nos participants et de notre communauté est notre priorité première. Du aux recentes mise à jour concernant le COVID-19 (Coronavirus), nous n’avons pas eu d’autres choix que d’ajourner notre conference à Paris, France. Nous avons reporté les évenements au 24-25 Avril, 2021

Le 24 avril 2021, sera la journée des professionnels de la santé (à la place du 7 novembre) et le 25 avril 2021, sera la journée communautaire pour les patients, leurs familles, et les soignants (à la place du 8 novembre).

Nous avons mis en place un lien qui répondra à vos questions aussi bien sur nos èvenements que sur des informations concernant le COVID-19 ci-dessous.

Pour ceux qui ont des questions à propos du HEDGE study vous pouvez suivre ce lien. 

FAQs for existing attendees

Can I get a refund?

Yes, we can process a refund for you, or we can transfer your registration to the updated conference date. 

How do I cancel my travel tickets and hotel? 

Please contact your travel provider and the hotel directly regarding your booking. Please check with your own credit card company and insurance company on their specific cancellation policies, in regards to getting your travel refunded. 

If the Society has booked your accommodation or travel for you, the Society will contact you and deal with your travel changes. 

Do I have to register again for the new conference date?

Current registrations will be carried over if the new conference date is suitable for you unless you request a refund.  

If I can’t make the new date can I have a refund?

Yes, we can process a refund for you. 

Who do I contact for further information?

Please email all further questions regarding this event to events@ehlers-danlos.com 


Pour en savoir plus concernant les questions pratiques.

Puis-je me faire rembourser?

Oui, vous avez la possibilité soit de vous faire rembourser soit d’avoir votre enregistrement reporté à la nouvelle date.

Comment annuler les réservations engagées pour assister à cet evenement (billets de transport, hotel)?

Veuillez contacter votre agence de voyage ou transporteur et directement l’hotel concernant vos reservations.Nous vous conseillons également de vérifier la possibilité de remboursement auprès de l’assurance carte de credit ainsi qu’avec vos assurances personnels concernant le remboursement.

Si vous etes passé par nous pour vos réservations, nous prendrons contact avec vous pour faire le point.

Est-ce que je dois me ré-enregistrer pour assister à la nouvelle conference en Avril?

Si vouq avez décidé d’accepter le report de l’évenement, votre dossier sera automatiquement traité.

Si je ne peux pas m’y rendre en Avril, puis-je me faire rembourser?

Oui nous vous rembourserons.

Y a t-il d’autres annulations prévues à ce jour pour d’autres evenements provenant de Society?

Aucun autre evenement n’est à ce jour affecté mais nous vous tiendrons bien entendu au courant si la situation change.

Qui dois-je contacter pour plus d’informations?

Vous pouvez nous envoyer un e-mail concernant cet evenement à events@ehlers-danlos.com

Register now for The Ehlers-Danlos Society conference in Paris

The Ehlers-Danlos Society European Learning Conference, Paris, April 24-25, 2021

We are delighted to invite you to register for our first ever European Learning Conference in Paris, France, taking place from April 24-25, 2021. The Ehlers-Danlos Society proudly brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes, hypermobility spectrum disorder, and associated symptoms and conditions.

Saturday, April 24, 2021, is Health Professionals Day. Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.⁠

Sunday, April 25, 2021, is Community Day. This conference is for those who have EDS and HSD, and their families.⁠ Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.⁠

Professionals Day April 24, 2021

Community Day April 25, 2021

The conference venue is:

Hotel Mercure Paris Orly Rungis
20 Avenue Charles Lindbergh, 94656 Rungis
Paris, France

Interested in becoming a conference sponsor? Please get in touch with Carissa Hocevar, our Chief Development Officer, and read/download our sponsorship prospectus here and the commitment form here.

Web

AFSED logo

http://www.afsed.com

Association Française des Syndromes d’Ehlers-Danlos (AFSED)

Fondée en Février 1997, elle se donne pour objectifs :

Aide au malade et à sa famille,
Sensibilisation du corps médical.
Soutien aux équipes de recherches.

Edition d’un journal, de news, de documents d’information,
Journée annuelle d’information médicale et/ou de rencontre,
Manifestations au profit des SED.

Brinze Sponsor
UNSED

https://unsed.org

The UNSED is empowered to represent users in hospital or public health authorities. The UNSED through its President Mrs. Valerie Gisclard, expert patient, is engaged in the working group of the International Consortium “Orthopedic” patient expert panel of The Ehlers-Danlos Society. The UNSED funds research, finance, and participation, in clinical studies, and is approved by the Ministry of Health. The UNSED is engaged as a representative of health users, in the therapeutic education of the patient.

Supporting Sponsor

Association Sed1+ logo

assosed1plus.com/

L’association SED1+, créée en septembre 2015, est issue de la volonté commune de plusieurs mamans atteintes du SED ou non mais ayant des enfants atteints par la maladie, de mettre en place une association dont l’objectif est d’agir dans l’intérêt général des malades ou de leurs aidants/accompagnants, dans la perspective d’une communication positive au sujet de la maladie afin de faire connaître et reconnaître notre syndrome.

Le souhait des fondatrices de cette association est de pouvoir faire avancer les choses, par et pour les malades, dans l’intérêt général de ses adhérents, sans aucune discrimination, préférence, ou individualisme. L’idée conductrice est de permettre à nos enfants, aux futures générations, de vivre avec le syndrome dans des conditions meilleures que celles que nous pouvons connaître par le biais d’une évolution des traitements mais aussi des mentalités, par la connaissance et la reconnaissance des SED et du HSD.

Supporting Sponsor
CSF logo

https://www.dmorthotics.com/

DM Orthotics is a world leading creator of medical rehabilitation and sports performance products.

We provide elastomeric fabric, dynamic movement orthoses to over 25 countries, helping to improve the lives of people who face a range of physical challenges. We are dedicated to the research, development and evolution of our products, with the aim to constantly improve the lives of the people who use them.

Everything we create undergoes the highest levels of clinical and scientific testing to ensure that it works at an optimal level for our customers.

Our design and production process incorporates state-of-the-art technology with traditional tailoring. We take the most successful elements from new technology and traditional tailoring to produce individually custom-made dynamic movement orthoses that are unmatched in their function and quality.

We work towards a single goal – to improve function and encourage independence for the user.

Supporting Sponsor
SED'in France logo

https://sedinfrance.org/

Created on April 4, 2018, the SED’in FRANCE association works to raise awareness and recognition of Ehlers-Danlos Syndromes, as well as to support patients suffering from this pathology.

The association was founded by two health professionals, affected daily by the pathology: Marie-Elise Noël, speech therapist in disability, suffering from SED, and Benoît Bonneté, masseur-physiotherapist; both members of GERSED (Study and Research Group on Ehlers-Danlos Syndromes). Arnaud Coutable-Groult, a social worker on disability who worked for ten years in the physical disability field, quickly joined the administration team.

Our identities as health and social professionals make the particularity of our association.

Each one makes available to everyone, and in particular members, their skills and knowledge and continues to keep themselves informed on a daily basis so that the answers to your questions are as precise and helpful as possible.

The SED’in FRANCE office is made up of five volunteers, personally concerned and very involved. The Bureau takes care of all the administrative tasks of the association and can rely for general management on Experts, pillars of the association without whom it could not continue. Experts are voluntary members who put their skills and energy at their disposal.

Supporting Sponsor

Swims Team logo

www.swims.team

SWIMS group teams are constantly on the lookout for innovative solutions, developed in-house by our R&D center or distributed on the basis of long-term manufacturer agreements. This is how we have developed for many years technologies such as Winback therapy or Game Ready compressive cryotherapy.

Each piece of equipment is installed by our own sales and technical teams. These provide you with an initial setup allowing you to use the equipment immediately. Our technical service will then ensure that the performance of this equipment is guaranteed over time.