22nd-29th April 2024

“Access to care for all PID patients, everywhere.

“Let’s make early diagnosis & timely access to quality treatment a reality worldwide.”

According to the World Health Organisation, “Universal Health Coverage” means that all people have access to the full range of essential health services and quality treatments they need, where and when they need them, across the life course.

However, significant differences exist in the level of care available for patients with rare diseases in and across countries globally.

Around the world, 80% of primary immunodeficiency patients do not yet have access to adequate care.

Lack of knowledge around PIDs, gaps in the availability and accessibility of diagnosis and treatments, lack of specialists & multidisciplinary care or shortages of the source material necessary to produce treatments leave individuals and families vulnerable.

It’s time to shatter these barriers. Let’s make universal access to early diagnosis & quality treatment a reality for all those living with PIDs. Together, we can raise awareness and bring about change.

Key messages

  • Equal access to PID care should be a priority worldwide.
  • Every PID patient should have access to timely diagnosis, quality health services & treatment, independent of their type of PID, where they live, their age, gender, or socio-economic status.
  • Advancing awareness, education and research is crucial to reduce remaining knowledge gaps surrounding PIDs, improve health outcomes and quality of life for patients around the world.

Key topics:

Reaching Equitable Diagnosis

Diagnostic tests and equipment should be made available in all countries to ensure early diagnosis for all patients – these may include blood tests, prenatal tests and genetic tests.

Achieving Universal Access to Specialized Care

Ensuring the availability of specialist and continuously trained teams at all care levels, from childhood to adulthood is important.

Ensuring Quality Treatments For All

Patients should have equal access to the growing range of therapeutic options that exist to treat PIDs and prevent or manage infections and complications, including immunoglobulin therapies, bone marrow transplants, gene therapies, vaccines, antibiotics and preventive medicines.

Join the campaign, help make a difference! Strike a Y, show support to the PID cause!

Find all campaign materials here.


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