October 8, 2024

First Bubble Care Conference

We had a very successful first conference of our NMO, Bubble Care.  We got excellent feedback and had a great atmosphere. 70 people arrived from all over the country, including adult patients and parents of sick children. We were all very excited to meet as a community and support each other. We presented the goals, activities and plans for Bubble Care. Three well-known immunologists gave lectures and answered questions. A CVID patient, an XLA patient and a mother of a SCID child shared their experiences and advice.

Picnic for XLA Families

We organised a picnic for XLA families. The ages of the XLA patients ranged from a small baby to 53 years of age. It was an opportunity to not feel lonely, to find people to share and consult.   It was so great for the parents of small children, who are so worried about their kids, to meet adult XLA  patients who are successful, have families and good jobs.

In the Press

An article published in a popular women’s magazine, and on a well-known online newspaper, told stories of 3 PID women patients and an explanation from a doctor.

Videos

Immunologist Dr David Hagin explains the diagnosis and treatment of PID patients, especially CVID. He advocates a more active approach to testing patients who display symptoms of Primary Immune Deficiency.  Ruti Steinberg, Chairwoman of Bubble Care, introduces the Israeli non-profit that offers support to patients with PID and speaks about Common Variable Immunodeficiency Disorder (CVID) and related diseases. There are also hints on how to do a sub C infusion.

English subtitles have been prepared for the videos and are available for use.

https://www.youtube.com/watch?v=_CsBjoks8MI

https://www.youtube.com/watch?v=Oor00V2qlmw