The Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy,education and research.
They work for many years to get SCID (Bubble Boy Disease) into hospital in all 50 states which has saved many babies lives. There is a boy in Rhode Island that was born with SCID and has been treated and is doing great. He has been in isolation since he was born, but made his first milestone this week by being able to have a puppy (only that has been vaccinated) this is the first of many things that will allow him to live a normal life.
Parents and children are invited and encouraged to get involved.
No one has signed up yet, but you could be the first!