Paciente virtual y local & familia opciones de apoyo

Hemos lanzado un grupo privado de Facebook para las familias de SDS y sus simpatizantes cercanos, que están interesados en discusiones honestas, conscientes y proactivas sobre SDS, las últimas investigaciones y oportunidades para involucrarse y marcar la diferencia, llamado el grupo de Facebook ACTION TEAM . Por favor, únase si desea participar.

¿Está buscando apoyo local y conexiones con pacientes cerca de usted? ¡Comuníquese con nosotros y lo ayudaremos a conectarse con otras familias en su área! También puede encontrar organizaciones establecidas de apoyo al paciente enumeradas por país (ordenadas Z > A), en la siguiente tabla.

¿No ve a su país representado? ¡Contáctenos!
Podemos ayudarlo a configurar un grupo e incluso alojar una página de información simple para usted .

New: Monthly Virtual Community Calls: Sundays, 3pm ET

(12pm Los Angeles, 3pm New York, 8pm London, 9pm Paris)

Are you new to the SDS community?

Do you need help understanding SDS or what we are doing about it?

Would you like to connect with us about anything SDS-related?

Schedule a one-on-one call with me today!
(We cannot give medical advice, but are happy to discuss anything else and point you to the right resources).

SDS Alliance Community Connection Resources

We have a private Facebook group for SDS families and their close supporters, who are interested in honest, mindful, and proactive discussions about SDS, the latest research, and opportunities to get involved and make a difference, called the ACTION TEAM Facebook group. Please join if you would like to get involved.

We also have Facebook support groups that are focused on certain regions (e.g. Latin America), languages (e.g French), and demographics (e.g. adult SDS patients). Please reach out to us if you would like to get connected.

Other Community Resources

We maintain a list of SDS-focused country-specific registered charities in order to support patients everywhere. See them listed alphabetically by country in the table below.

Don't see YOUR country represented? We can help you set up a group and even host a simple info page to help serve YOUR community. Contact us!