Solicitud del test genético

Este programa ha sido desafortunadamente suspendido

Para los pacientes residentes en España, el sistema regional de salud correspondiente debe hacerse cargo del test genético necesario, ya que es parte de la Cartera Común de Servicios del Sistema Nacional de Salud según lo regulado en la Orden SSI/2065/2014, de 31 de octubre, por la que se modifican los anexos I, II y III del Real Decreto 1030/2006, de 15 de septiembre, por el que se establece la cartera de servicios comunes del Sistema Nacional de Salud y el  procedimiento para su actualización.
El texto de referencia se puede consultar en ESTE enlace.


Metodología

El Instituto de Genética Médica y Molecular (INGEMM) En Madrid, España, ofrece un test genético para el síndrome de Dravet y patologías relacionadas en colaboración con la Fundación Síndrome de Dravet. El test utiliza un panel de epilepsias diseñado por el INGEMM que incluye 425 genes. Se le enviará un informe con los resultados obtenidos en 6 meses aproximadamente.

Bajo este programa, las muestras serán analizadas de manera gratuita (salvo por los gastos de extracción y envío de muestras que correrán a cargo del solicitante). Aceptamos muestras procedentes de cualquier país siempre y cuando reúnan los requisitos para el estudio.

Para poder participar en este estudio, la solicitud de test genético debe ser emitida por un médico para un paciente con sospecha de síndrome de Dravet y contener todos los documentos y muestras necesarias.

Criterios de sospecha de síndrome de Dravet requeridos para el estudio

Bajo la colaboración con la Fundación Síndrome de Dravet, los pacientes que tengan un cuadro clínico cercano al síndrome de Dravet serán admitidos en este estudio. Consideramos que el cuadro clínico es cercano al síndrome de Dravet cuando el paciente reúne un mínimo de dos de los siguientes criterios:

– 2 convulsiones antes de los 6 meses de edad,

– Presencia de crisis parciales, hemiclonías o mioclonías en el primer año de vida,

– Convulsiones asociadas a las vacunas, baños calientes o calor ambiental en el primer año de vida,

– Convulsiones febriles persisitiendo en edad mayor de 5 años,

– Convulsiones febriles frecuentes, severas, o de duración prolongada en el primer año de vida.

Deberá especificar en su email de solicitud del test genético cómo el paciente reúne al menos dos de estos criterios para que podamos confirmar que es elegible para el estudio. Si no está seguro de que el paciente reúna suficientes criterios puede consultarnos también en
[email protected] para aclarar si es elegible.

Documentos y muestras necesarios

Si su paciente tiene un cuadro clínico sugestivo del síndrome de Dravet, deberá enviar los siguientes documentos y muestras para que podamos realizar el estudio por NGS. La falta de alguna muestra o documento implicará que la muestra no será admitida a estudio y no será analizada.

1. Muestra del paciente índice y ambos progenitores: muestra de sangre en EDTA (mínimo 3ml) o ADN genómico previamente extraído, preferiblemente de linfocitos de sangre, con una cantidad mínima de 10µg, concentración mínima de 50ng/µl, ratio 260/280 cercano a 2. Las muestras deben llegar al INGEMM en máximo 24-48 horas desde su extracción con lo que preste atención a los posibles documentos de aduana requeridos a fin de no retrasar el envío.

2. Cuestionario HPO de datos clínicos del paciente y Cuestionario de datos farmacológicos, acompañándolo de una copia de un informe clínico actualizado, si es posible.

3. Consentimiento Informado.

Cómo solicitar el test genético

Documentos: Los documentos de Cuestionario HPO de datos clínicos del paciente y Cuestionario de datos farmacológicos y Consentimiento informado (dos documentos) así como cualquier duda sobre el proceso deben ser dirigidos a [email protected]

Los documentos PDF son editables en el ordenador y no necesitan ser impresos y enviados escaneados o en papel.

Cuestionario HPO de datos clínicos del paciente

Cuestionario de datos farmacológicos y Consentimiento informado

Muestras: a muestra del paciente índice y ambos progenitores deben ser envaidas a la siguiente dirección postal:

Instituto de Genética Médica y Molecular (INGEMM)

Edificio Quirúrgico

Hospital Universitario La Paz

Paseo de La Castellana, 261

28046 MADRID

ESPAÑA

IMPORTANTE: El coste del envío y otros costes relacionados con la extracción de las muestras corre a cargo del solicitante. No aceptaremos ninguna muestra que nos requiera abonar los gastos de envío.

Cómo es posible que ofrezcamos el test genético gratuito

Empezamos a ofrecer el test genético para el diagnóstico de síndrome de Dravet desde 2011, primero por Sanger y MLPA y actualmente en forma de un gran panel NGS. Esto ha sido posible gracias al apoyo del INGEMM/Hospital La Paz, BBK, Microsoft, y múltiples donantes. Si ayudamos a diagnosticar a su hijo o simplemente si quiere apoyarnos en esta labor, considere realizar una donación a la Fundación para que el test gratuito siga existiendo. La información sobre como donar a la Fundación se encuentra en nuestra web.

Somos conscientes de que el panel con 425 genes de epilepsia tiene una utilidad diagnóstica y de investigación en más patologías que solo las cercanas al síndrome de Dravet que contempla el programa actual. Si pertenece a una organización de pacientes de otro síndrome de epilepsia genético y quiere explorar cómo hacer el test del INGEMM disponible para sus pacientes contacte con nosotros en [email protected].

Lista de genes incluidos en el panel genético (v5.0, a fecha de Enero de 2016)

AARS, ABAT, ABCB1, ABCC2, ABCC8, ABCG2, ACMSD, ACOX1, ACY1, ADAM23, ADAR, ADGRV1, ADRA2B, ADSL, AKT3, ALDH4A1, ALDH5A1, ALDH7A1, ALG11, ALG13, AMT, ANKK1, ANO3, AP4E1, ARHGEF2, ARHGEF9, ARSA, ARX, ASAH1, ASL, ASPM, ASS1, ATN1, ATP1A2, ATP1A3, ATP6AP2, ATP7A, ATP7B, AUH, BCKDK, BCS1L, BRAF, BRAT1, BRD2, BRWD3, BTD, C10orf2, C12orf57, CACNA1A, CACNA1C, CACNA1H, CACNA2D1, CACNA2D2, CACNB4, CAMKMT, CASK, CASR, CBL, CD46, CDKL5, CELSR3, CERS1, CERS2, CHD2, CHRFAM7A, CHRNA1, CHRNA2, CHRNA4, CHRNA7, CHRNB2, CLCN2, CLCN4, CLCN6, CLN3, CLN5, CLN6, CLN8, CNR1, CNR2, CNRIP1, CNTN2, CNTNAP2, COA5, COL6A2, COX15, COX6B1, CPA6, CPS1, CPT2, CRH, CREBBP, CSTB, CTSA, CTSD, CYBA, CYP1A1, CYP1A2, CYP1B1, CYP2A6, CYP2C19, CYP2C9, CYP2D6, CYP3A4, CYP3A5, D2HGDH, DAGLA, DCX, DEAF1, DEPDC5, DGKD, DDHD2, DDX3X, DLD, DNAJC6, DNASE1, DNM1, DOCK7, DOLK, DRD2, DYRK1A , EEF1A2, EFHC1, EHMT1, EIF2B1, EIF2B2, EIF2B3, EIF2B4, EIF2B5, ELP4, EPHX1, EPM2A, FAAH, FANCL, FARS2, FASN, FASTKD2, FH, FLNA, FOLR1, FOXG1, FOXRED1, FRMD3, GABBR1, GABBR2, GABRA1, GABRB3, GABRD, GABRG2, GAMT, GBA, GCK, GCSH, GFAP, GLB1, GLDC, GLI3, GLRA1, GLRB, GLYCTK, GNAO1, GOSR2, GPHN, GPR18, GPR55, GPR56, GRIA3, GRIN1, GRIN2A, GRIN2B, GRIN2C, GRN, GSR, GSTM1, GTPBP3, HAX1, HCCS, HCN1, HCN2, HCN3, HCN4, HEPACAM, HEXA, HEXB, HLA-A, HLA-B, HLA-C, HLA-DQB1, HLA-DRB1, HNF4A, HNRNPU, HSD17B10, HSD17B4, HSPA1L, HTR2B, ICAM1, IDS, IER3IP1, IFI44L, IFNG, IL27RA, INS, IQSEC2, JRK, KCNA1, KCNA2, KCNB1, KCNC1, KCND2, KCNH1, KCNH2, KCNH5, KCNJ10, KCNJ11, KCNJ2, KCNMA1, KCNQ1, KCNQ2, KCNQ3, KCNT1, KCNV2, KCTD7, L2HGDH, LEPR, LGI1, LGI2, LMNB2, MAGI2, MAPK10, MBD5, MC3R, MCCC2, ME2, MECP2, MED17, MEF2C, MFSD8, MGLL, MLC1, MMP1, MOCS1, MOCS2, MOCS3, MRGPRX1, MTHFR, MTOR, NAPB, NAPEPLD, NDN, NDUFA1, NDUFA10, NDUFA11, NDUFA2, NDUFAF2, NDUFAF3, NDUFAF4, NDUFAF5, NDUFAF6, NDUFS1, NDUFS2, NDUFS3, NDUFS4, NDUFS6, NDUFS7, NDUFS8, NDUFV1, NDUFV2, NECAP1, NEDD4L, NEU1, NHLRC1, NIPA2, NKX2-1, NOS2, NOX1, NOX4, NPAS3, NPC1, NR1I2, NR2F1, NRXN1, NSDHL, NUBPL, OCLN, OPHN1, OTC, OTX1, PAFAH1B1, PAH, PANK2, PAX6, PCDH19, PCDH7, PDHA1, PDYN, PEX5, PHF6, PIGA, PIGO, PIK3CA, PLA2G6, PLCB1, PLP1, PMM2, PNKP, PNPO, POLG, PPARG, PPM1B, PPT1, PREPL, PRICKLE1, PRICKLE2, PRKCZ, PROC, PRODH, PRRT2, PSAT1, PSEN1, PTEN, PTGS1, PTGS2, PURA, QARS, RBFOX1, RBFOX3, RELN, RHOA, RNASEH2A, RNASEH2B, RNASEH2C, ROGDI, RTTN, RYR2, RYR3, SAMHD1, SCARB2, SCN1A, SCN1B, SCN2A, SCN2B, SCN3A, SCN3B, SCN4A, SCN4B, SCN5A, SCN7A, SCN8A, SCN9A, SDHA, SERPINI1, SETBP1, SETD2, SEZ6, SGCE, SLC12A2, SLC13A5, SLC16A2, SLC17A5, SLC19A3, SLC1A3 , SLC25A12, SLC25A13, SLC25A20, SLC25A22, SLC2A1, SLC3A1, SLC35A2, SLC35A3, SLC6A1, SLC6A5, SLC6A8, SLC6A11, SLC9A6, SNAP25, SNIP1, SNRPN, SOD1, SOD2, SOX11, SPTAN1, SRP9, SRPX2, ST3GAL3, ST3GAL5, STK25, STRADA, STX1B, STXBP1, STYXL1, SUCO, SURF1, SYN1, SYNGAP1, SZT2, TACO1, TBC1D24, TBX1, TCF4, TNK2, TOR1A, TP63, TPP1, TRAP1, TRAPPC10, TREX1, TRPM8, TRPM6, TRPV1, TRPV2, TSC1, TSC2, TUBA1A, TUBB2B, UBE3A, UGT1A3, UGT1A4, UGT1A6, UGT2B7, UPB1, USP9X, VRK2, WDR62, WWOX, YWHAG, ZEB2.

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TERMS & CONDITIONS

The Dravet Syndrome Conference 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 16th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 17th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling and accommodation costs or any other personal expenses.

Admittance to the workshop without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days
prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational,
material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks. 

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.