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IDF is your home for hope.

Has your life been impacted by PI? When navigating symptoms, diagnosis, treatment, insurance, and emotions, turn to IDF for answers and connections.

Interested in joining one of our virtual caregiver support groups?

Join Jodi Taub, LCSW, PLLC, as she leads two virtual caregiver support groups, which are a great opportunity for caregivers to meet and explore shared experiences as a caregiver to someone with PI. These groups provide a safe, judgment-free, and confidential virtual space to address caregiving-related emotional distress while exploring PI-specific challenges. Participants must be 18 years or older and connected to a person with a PI (this includes grandparents, siblings, aunts, uncles, etc.)

See next meeting

Ask IDF

Getting answers can help create peace of mind. Ask us anything and we'll consult with experts.

Specialists can be located online through the IDF Clinician Finder. (Please note if no results populate, increase the distance from your address. You can also just search by your state).

Please note the following important information about the list of specialists:

  • These clinicians have voluntarily reported to IDF that they diagnose, treat, and manage patients with primary immunodeficiency (PI). Please know that IDF does not verify these reports.
  • This is not a referral. IDF does not recommend one clinician or medical facility over another or refer patients to a particular provider.
  • It is your responsibility or that of your legal guardian to evaluate, select and engage a clinician or facility, given your insurance coverage and other circumstances, to help you manage your PI.
    There might be other clinicians at each facility that also treat PI.

Questions to ask while evaluating a clinician or facility:

  • Do you accept my insurance?
  • Do you diagnose and treat patients with primary immunodeficiency diseases? (If already diagnosed, name the PI.)
  • How many patients with primary immunodeficiencies are treated at your facility?

For those receiving Ig replacement therapy:

  • Do you prescribe IVIG and SCIG?
  • Do you prescribe more than one brand of immunoglobulin?
  • Do you offer patients receiving IVIG the option of receiving their infusion in a medical or home setting?

Some patients also find physicians through our Get Connected Groups or IDF Friends

Our virtual education programs are recorded and uploaded on our website and YouTube page. If you only want to view our webinars, you can access them directly here

“I think that IDF has such a welcoming community. If you are feeling a little bit lost or you’re having trouble keeping relationships or making friends, I think this is a wonderful opportunity to branch out of your social circle, go out of your comfort zone, and meet a lot of new people who can likely become lifelong friends.”

Victoria, pictured second from left with IDF friends
Victoria (pictured second from left) with IDF friends

Sharing experiences

It can be a healing experience to see how other people navigate their PI journey and to share your own story.

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Additional organizations that can offer support 

Dedicated to health insurance and financial assistance.

BenefitsCheckUp

Many older people need help paying for prescription drugs, healthcare, utilities and other basic needs. Ironically, millions of older Americans—especially those with limited incomes—are eligible for but not receiving benefits from existing federal, state and local programs. Ranging from heating and energy assistance to prescription savings programs to income supplements, there are many public programs available to seniors in need if they only knew about them and how to apply for them.

Caregiver Action Network

The Caregiver Action Network (CAN) is a family caregiver organization working to improve the quality of life for those who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age.

 

Children’s Defense Fund

The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program.

 

Families USA

Families USA is a non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The website contains state and national resources.

Family Voices

Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs.

 

Good Days

Good Days is a national non-profit charitable organization that lifts the burdens of chronic illness through assistance, advocacy, and awareness. Their financial assistance program for people with chronic granulomatous disease (CGD) providers up to $3500 for medication costs.

Health Insurance Resource Center

A resource for families, individuals and the self-employed, the Health Insurance Resource Center provides the tools to become a better-informed health insurance consumer.

 

Insure Kids Now

This site provides links to state child and adolescent health insurance programs.

 

Invisible Disabilities Association

The Invisible Disabilities Association (IDA) helps those living with various conditions, as well as their loved ones, through their website, articles, literature, projects and seminars.

 

Keep Swimming Foundation

Keep Swimming Foundation provides relief to families of critically ill patients who require extended inpatient medical care at an accredited hospital through micro grants ranging from $100 to $1,500.

Miracle Flights

Provides children and their families free flights to distant, specialized care and second opinions.

 

National Committee for Quality Assurance

The National Committee for Quality Assurance (NCQA) is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans.

 

National Disabilities Rights Network

The National Disabilities Rights Network (NDRN) is a non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.

 

National Family Caregivers Association

The National Family Caregivers Association (NCFA) is a grass roots organization created to educate, support, empower and speak up for millions of Americans who care for chronically ill, aged or disabled loved ones.

 

National Organization for Rare Disorders

NORD logo

The National Organization for Rare Disorders (NORD) is a non-profit organization that provides information, programs, and services for thousands of rare medical conditions, including primary immunodeficiencies.

National Patient Travel Center

The National Patient Travel Center is a non-profit organization that provides a variety of services to individuals and families seeking ways to travel long-distances for specialized medical evaluation, diagnosis and treatment.

 

NeedyMeds

NeedyMeds provides information on programs that help people facing problems paying for medications and healthcare; assists those in need in applying to programs; and provides health-related education using innovative methods.

Patient Advocate Foundation

The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. They offer a co-pay relief program for individuals with all types of insurance.

Partnership for Prescription Assistance

The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.

 

Patient Notification System

The Patient Notification System is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as intravenous immunoglobulin (IVIG), about product recalls.

 

Patient Services Incorporated (PSI)

Patient Services Incorporated (PSI) is a non-profit charitable organization dedicated to subsidizing the high cost of health insurance premiums and co-payments for persons with specific chronic illnesses, including primary immunodeficiencies.

 

Rare Wish

moon over logo reading rare wish

Rare Wish (a sister organization to Rare Strides ) grants wishes, funds clinical innovation, and offers free healthcare tools to improve the quality of life for families affected by rare disease.

RxAssist

Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that healthcare professionals and patients can find the information they need.

 

Save Babies Through Screening Foundation

Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening.