Patients & families

Our Foundation is here to support you in this difficult time, please find below a comprehensive list of all resources we offer

Step 1. Join our private Facebook community

Access helpful resources and connect with other patients & families affected by IPEX

Our IPEX family
Join the Foundation on FacebookJoin the Foundation on Instagram

Step 3. Find an expert near you

Find a doctor with experience caring for IPEX near you

IPEX specialists

Step 4. Learn about current clinical trials

Updates on trials and treatments for patients with IPEX

Towards a cure

Step 5. Explore our support programs

  • Contact us directly

    We are available to support you over email, phone, and video

    Get in touch 

  • Monthly community call

    Talks with experts, treatment stories, self care, and more

    Join our next call 

  • Financial grants

    Direct support for trial-related costs and other financial hardship

    Learn more 

  • Emotional and bereavement support

    We are here to support you in any way we can during difficult times

    Contact us 

Step 6. Get involved

  • Hold an event

    If you are interested in holding an event to raise funds and increase awareness, please let us know!

    Get in touch 

  • Register with your national bone marrow registry

    Bone marrow transplants are still the best option for IPEX, and donors are severely lacking

    Get swabbed 

  • Tell your friends

    Get them swabbed for the bone marrow registry, increase awareness of the signs of IPEX

    Know the signs 
Questions? Contact us!

More resources

What is IPEX?

Learn more about this unique disease at the forefront of immune research

Know the signs

Patient stories

Read the stories of real patients and their loved ones affected by IPEX

Be inspired