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Immune Deficiency Foundation

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Nonprofit Overview

Causes: Health, Medical Disciplines Research

Mission: The Immune Deficiency Foundation 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.

Community Stories

27 Stories from Volunteers, Donors & Supporters

Sonia10

Volunteer

Rating: 5

The Immune Deficiency Foundation (IDF) provides the best advocacy, educational resources and patient/family support services. IDF is an extension of my family and is as much a lifeline for me as my immunoglobulin infusions. Thanks for everything you do!

Sonia10

Volunteer

Rating: 5

The Immune Deficiency Foundation (IDF) provides the best advocacy, educational resources and patient/family support services. IDF is an extension of my family and is as much a lifeline for me as my immunoglobulin infusions. Thanks for everything you do!

Previous Stories
1

Volunteer

Rating: 5

For more than 20 years, IDF has been like a lifeline to me and my family, providing support and education.

General Member of the Public

Rating: 5

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.

Tammy138

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Cindi8

Volunteer

Rating: 5

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!!!

3

Volunteer

Rating: 5

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

2

Volunteer

Rating: 5

IDF is amazing!!! They are like family!!! They help us out in anyway possible!!!!

1

General Member of the Public

Rating: 5

This organization is a soft place to land for kids with PI !

1

Volunteer

Rating: 5

Incredible at educating families and the public about PIDD and creating community events to raise awareness.

1 Michelle393

General Member of the Public

Rating: 5

The IDF is absolutely AMAZING!! They educate, encourage and build confidence in patients and caregivers. They work tirelessly to further advance knowledge and treatment options in the PI community as well!!

1

Volunteer

Rating: 5

I was so excited to find IDF and get helpful information about my diagnosis! I love connecting with others and getting all the latest details about a variety of topics. They have information relevant to all ages.

1

Client Served

Rating: 5

The IDF is an amazing patient focused foundation. They provide free educational materials, conferences, webinars and educational videos. They can provide support as patient advocates for insurance and health care issues.

I honestly don't know where my family would be without this organization and we can't wait to go to the annual IDF meeting next year!

1 Karen444

Client Served

Rating: 5

I was diagnosed with a PI (CVID) in December 2013. IDF has provided information, education classes and people to speak with when needed. IDF is awesome. I'm thankful for IDF, and the wonderful friends I've made through them.

1 Catherine92

General Member of the Public

Rating: 5

I am so grateful for this foundation , I can't Believe how much this has help me.... being diagnosed with CVid in 2014 was Shocking !...I Felt so alone and overwhelmed ... i'm learning so much and I feel that there are other people like me ... I still did not start infusions yet .. but I know Being a member of this foundation is going to educate me in the right Direction! It save my life ... zebra strong

1

General Member of the Public

Rating: 5

The IDF is a phenomenal resource for patients and family members living with PI. They have helped our family find and use resources to help our son and provide many services for all members of the family. If you're looking for a doctor, the latest research or a friendly ear this is the place to start!

1 Kim_245

General Member of the Public

Rating: 5

This is a fantastic organization to help patients and families with immune deficiencies!! The have helped me with so many issues from insurance to finding a doctor to finding other patients to talk to. Very friendly, helpful and understanding!!

1

Client Served

Rating: 5

IDF was the first to introduce me to other patients. They served as an invaluable resource for feeling connected and supported. It is so important to know that I have IDF as a resource, which I have found especially helpful in navigating insurance issues.

1 Shelley39

General Member of the Public

Rating: 5

IDF was instrumental in helping us navigate our son's future after his diagnosis. They tirelessly continue to help and support thousands of patients and caregivers.