Really Crappy Seizures Club

June 29, 2020
Dupq Alliance is proud to be a partner of the Really Crappy Seizures Club (RSCS)

Overview:

The RCSC will provide information and communications opportunities between groups focused on providing day to day support to families living with the pediatric-onset severe epilepsies, especially the epileptic encephalopathies. (Epileptic Encephalopathies are defined as a group of rare neurodevelopmental disorders, characterized by early-onset seizures that are often intractable with a developmental delay.)

Communication opportunities will focus on organizational operations and community happenings.

Partnerships may evolve from these communications but are not required of participating organizations.

Who the RCSC Serves:

The RCSC serves non-profit organizations focused on providing day to day support to families living with the pediatric-onset severe epilepsies, especially the epileptic encephalopathies. Most RCSC participating organizations are small to medium size non-profits that focus on a particular epilepsy syndrome. We encourage all in the RCSC commit embrace the rare values of the #ThriveForRare Initiative.

Desired Outcomes:

Provide a network for Q&A on key topics.
Share Enduring Materials so we don’t have to reinvent the wheel.
Stay informed on things happening in the broader community.
Enable partnerships (e.g. Advocacy, Yearly Goals, etc.)

Working groups include:

  • Education work group
  • Endocrine work group
  • Investigators Workshop
  • Transition of Care Workshop

 

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