Having witnessed the wonderful support and information this foundation has given to my daughter's friend, it is comforting to know the understanding, awareness and knowledge to help feel better is growing because of their efforts.
After being so ill almost constant and being dx with multiple autoimmune dx. I was finally dx with CVID. Then referred to IDF, they have helped so much mentally and financially. Thank you.
In 2008, after suffering from years of sinus infection after sinus infection and many cases of strep throat, I was finally diagnosed with a rare disease called Common Variable Immunodeficiency, or CVID. CVID is one of a group of 300 Primary Immunodeficiency Disorders, each with a wide variety of symptoms and severity.
In some cases, genetics have been shown to cause CVID, however in most cases the cause is unknown.
Patients with CVID, like me, have depressed antibody levels, also known as immunoglobulins, in the fluid portion of the blood. This makes us highly susceptible to infections. Anything from sinus, upper-respiratory, and gastro-intestinal. Plasma that is donated and processed contains the immunoglobulins I, and those like me need to survive and function.
The Immune Deficiency Foundation helped me when I was newly diagnosed and looking for information about my disease. They provided me with much written information. They also provided me with peer support. Within a year of my diagnosis, an education meeting was held in my home town of St Louis. This is a large meeting that provides Physicians and other services to educate patients, family members and friends about CVID and Primary Immune Diseases closely related. I learned so much from this meeting but not only that, I meet people that had the same disease I had that lived in the same city as I did. Some of those people have become my closest friends and now we volunteer for the IDF together. This is one of the best companies out there! Everyone you meet works so hard to help those that need help and they all care so much! I love volunteering for the IDF too.
Were it not for a random encounter w an IDF ad in an airport, our colleague's amazing daughter would have gone without the diagnosis she needed (not wanted) to hear-to make a message out of her mess and be on a road to healing.
The finest grass roots patient support, advocacy and educational organization that I've ever encountered. They support patients with primary immune diseases. The highest Charity Navigate rating for efficiency and openness.
Very very thankful for IDF!! We have 5 boys with CGD. IDF has been a great support Avenue for my family. Without the awareness this organization has brought we would be minus several close ties to others seeking the same support. They have sacrificed time & effort to reach out to others and it is working in so many ways!! We feel like this is an extension of family who shares many of the same difficulties we have. Sometimes having a disorder can make you feel like an alien. Thankfully we feel united because of the opportunity they have provided. We are very grateful for all they have done. Thank you IDF!!!
IDF was instrumental in my diagnosis of CVID in 2011 and became not only important in assisting with Educational, insurance and assistance. Since then theyou have become family and proud to be a volunteer to help others with PID diagnosis. They are more than a Charitable organization they are essential to all patients! ! Rashad Fontenot
IDF is amazing!!! They are like family!!! They help us out in anyway possible!!!!
This organization is a soft place to land for kids with PI !
Incredible at educating families and the public about PIDD and creating community events to raise awareness.