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22nd-29th April 2023

Data for PIDs

Why is data important in improving PID care?

Participate in our online campaign and share your thoughts on why you think data is essential in improving care for Primary Immunodeficiencies! Enter your quotes below and we will publish them on this page and on our social media channels!

Once your quote is published you will receive an e-mail update!

Once published, download the visual here, enter your quote & save as PNG! Don’t forget to use the hashtag #DataforPIDs and tag World PI Week!

Help us spread the word and raise awareness!

This campaign must not be used for commercial purposes. Please do not mention specific drug names or personal information in your quote. For any question, please contact the World PI Week office team. We look forward to your contribution!

Share your quote

  • Birgit Chow

    I want to be your first patient with a PID diagnosis! Learn thru my body- i interviewed new family physicians and none of them knew what a PID patient was let alone the ten warning signs! I remember thinking they just had no knowledge about t it and probably have one or two patients who aren’t diagnosed.

  • Rashann Fontenot

    Data can help the quality of Life for PI Patients because; currently the average time to be appropriately diagnosed takes too long. By the time most PI patients are diagnosed, they can already experience irreversible damage.

  • Tonya Henry

    Data is important because as data increases, so does the accuracy of treatment. Many PI patients take years to get diagnosed because there is a lack of data on early testing and information for the pediatrician.

  • Wolfhard Erdlenbruch

    Data is a critical tool to improve the lives of patients in myriad ways. Our efforts to support patients with PID do not stop with the development of transformative plasma-derived therapies that many PID patients rely on. At Takeda, we are also working on projects to develop diagnostic algorithms for early identification of PID, simplify monitoring IG levels in PID patients, and characterize PID patients for optimal and individualized treatment and care, among others. Thereby, we hope to use data to help identify and address unmet needs and improve the lives of patients in a holistic way.

  • Evangelia Evgenikos

    Many doctors worldwide don’t know a lot about PIDs. As a result, patients and their families often have a hard time getting a correct diagnosis and then following a suitable treatment method.
    Data is very important as it helps raise awareness, and it can help improve significantly the quality of life of these patients and their families.

  • Christiana Demetriou

    Living for thirty years undiagnosed with the invisible disease, and going from doctor to doctor with a wrong diagnosis, I suffered a lot and so did my family. Therefore, the data are very significant for a better quality of life for both patients and their families.

  • Maria Charalambous

    Because Life matters, even for invisible illnesses!

  • Denise Reich

    Data makes the difference between patients receiving timely, accurate diagnosis and care – or contending with the very serious consequences of undiagnosed, untreated PID. Doctors can’t recognize, diagnose or treat what they don’t know about.

  • Helen Blakeley

    To increase knowledge and awareness of this invisible illness

  • Ricardo Pereira

    Data is important for improving PID because it helps researchers and healthcare professionals understand the condition, develop effective treatments and support clinical trials. By collecting and analyzing data, valuable insights can be gained into the underlying causes, patient characteristics, and treatment outcomes of PID.

  • World PI Week

    Robust, quality health data is critical to enhance disease knowledge, healthcare delivery, medical research and development, support policy and regulatory decisions; and ultimately benefit patients as well as societies.

    In rare diseases like PIDs, data is all the more vital to provide more efficient, higher quality, safer and more personalised care.