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Support Group

Most often when an individual is trying to cope through challenging times, family members and friends may sympathize, but they don’t always know what to say or the best ways to help...

Reasons to join our SJS/TEN Support Group:

  • We care for supporters and SJS/TEN survivors on the recovery journey.

  • The group is developed to join together those of us who are dealing with similar challenging circumstances – the long-term effects of SJS/TEN.  

  • Through the sharing of our experiences, we’re able to offer support, encouragement, and comfort to each other and receive the same in return.

  • The SJS/TEN recovery journey can be very challenging. Therefore, one of the best medicines can often be the voice of people who have walked in your shoes.

  • Our monthly meetings provide the opportunity to have personal conversations with expert medical specialists in the SJS/TEN field.

We are Stronger Together in the fight against SJS/TEN.
#SJSCANTSTOPME

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Regional Support

1

Stevens-Johnson Syndrome Foundation USA
Non-profit organization founded in 1996. The purpose of the foundation is to provide the public and medical communities with information on adverse drug reactions.

2

SJS Awareness UK
Charitable organization started in 2009 to provide information and support to those affected by SJS/TEN.

3

Kindness for Kimberlee
An organization for kids affected by SJS/TEN to connect, share information, and provide support one another. The group is open to patients, caregivers, and healthcare professionals.

4

SJS Kids
Support
A resource for SJS kids, provides support, and explains SJS to kids in words they can understand

5

RareConnect
Online platform connecting individuals living with rare diseases, including SJS/TEN. 

6

National Organization for Rare Disorders (NORD)
NORD is a non-profit organization that provides information, advocacy, education, and support for individuals living with rare diseases.
Canadian Organization for Rare Disorders-CORD
Canada’s national network for organizations representing all those with rare disorders, including SJS/TEN

7

PTSD Coach
Canada App
App that provides a self- assessment, tips for managing PTSD distress, and a direct connection with crisis support and information about other professional treatment. Manages symptomse and tracks progress. 

8

PTSD Coach
USA App
App that provides a self- assessment, tips for managing PTSD distress, and a direct connection with crisis support and information about other professional treatment. Manages symptomse and tracks progress. 

9

Loyola SJS Support Group
Support group based in Illinois, USA.

10

UK Support

11

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