Closing Doors on SCID, Opening Hope on Treatment

Closing Doors on SCID In 1997, the first X-SCID Conference was held in Bethesda, Maryland. This first conference focused on only X-SCID, but was such a huge success that it helped pave the way for IDF's popular Patient and Family Conferences. The first conference had approximately 50 families in attendance from the US and even brought participants from as far away as Europe. In the succeeding 10 years there have been new genes identified, advancements in treatment options, newly diagnosed families, and new concerns from SCID families regarding how to cope with this disease on a day to day basis. These issues and more underscore why another conference is so important. While the first conference focused only on X-SCID, this event invites the participation of families who are dealing with, or who have dealt with, ANY form of SCID. Families from the US and abroad are welcome to attend. Representatives and speakers from a variety of treatment centers will discuss BMT's, gene therapy research, newborn screening, medical complications, genetic counseling, and psychological effects.

The conference will be held July 25th - 27th, 2008 at the Wintergreen Resort and Spa in Wintergreen, Virginia. Conference details can be found on the web at: www.scidconference2008.wordpress.com/.


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Meeting Goals:

  1. Gather families affected by SCID together in a non-medical setting, share experiences with one another and present concerns to experts in immunology, Bone Marrow Transplantation, and genetics.
  2. Review research achievements in SCID diagnosis (including newborn screening); treatment (including BMT approaches, gene therapy, and enzyme therapy); post-transplant outcomes (reconstitution, side effects of chemo-therapy); and management of medical complications and family psychological issues.
  3. Develop and prioritize outstanding questions for future research.
  4. Synthesize families' perceptions and experiences to provide updated and informed genetic counseling to newly diagnosed families.
  5. Coordinate with planned efforts for a national SCID transplant registry and newborn screening.