Are you interested in learning more about gene therapy or stem cell transplant as treatments for SCID? Would you like to be better informed about genetic counseling as it relates to SCID? How much do you know about the importance of newborn screening?
The upcoming monthly SCID Compass Lunch & Learn series will answer these questions and many more when it kicks off this fall. As part of its outreach effort, the SCID Compass program is offering monthly, hour-long lunchtime presentations so that parents, families, and individuals have opportunities to learn from professionals in a webinar format. The goal is to provide education and a community of support for everyone coping with a diagnosis of SCID.
The Lunch & Learns will cover the most popular topics related to SCID as identified through a needs assessment conducted of parents and caregivers in 2019, as well as aspects of SCID featured on the SCID Compass website, www.scidcompass.org.
The SCID Compass Lunch & Learns will cover:
- gene therapy
- hematopoietic stem cell transplant
- the Primary Immune Deficiency Treatment Consortium
- newborn screening basics
- genetic counseling and SCID
SCID Compass piloted its Lunch & Learn series in June 2020 when Dr. Jack Routes of the Medical College of Wisconsin provided an introduction to SCID.
“We know that many organizations, including IDF, are not doing in-person events and we wanted to bring speakers directly to the parents and provide information in short, bite-sized formats,” explains Alissa Huston, SCID Compass Program Manager.
In addition to the roughly 30-minute presentation by a professional, each SCID Compass Lunch & Learn session will provide participants an opportunity to ask questions.*
While those familiar with SCID Compass will want to tune in to the Lunch & Learns, the program will also gain referrals of new parents by working with the Primary Immune Deficiency Treatment Consortium (PIDTC) treatment centers, state follow-up programs, and SCID Angels for Life.
The Lunch & Learns will be recorded and accessible via the SCID Compass website at www.scidcompass.org.
Stay up to date with events, including SCID Compass Lunch & Learns, by creating an account and subscribing to IDF alerts at www.primaryimmune.org.
*Questions asked by participants must be generalized in nature, as HIPAA guidelines prohibit presenters from giving any specific medical advice to participants, and no personal information about participants or presenters can be shared. In addition, SCID Compass encourages participants to seek the advice of a qualified health professional with questions concerning a medical condition.