About
Our vision is to serve the patient community as a patient-run organization—by patients, for patients—to raise awareness, foster community support, and advocate for equitable care and research for all those affected by IgG4-RD and other rare diseases.
Our mission focuses on funding patient advocate training, patient medical care costs, such as travel to qualified doctors, co-pays, as well as out of pocket or uninsured visits and treatments.
The IgG4-RD Life podcast is a platform where the voices and experiences of IgG4-RD and other rare disease patients are heard, valued, and shared. We are committed to spreading hope, education, and empowerment, one episode at a time.
This platform also provides resources from caregivers, medical personnel, allies, and organizations that are relevant to IgG4-RD and other rare disease communities, especially where equitable care and treatment is essential.
MEET YOUR CO-HOSTS
Mahsa Pazokifard
My journey through life has been defined by a series of health challenges that began from the moment I entered this world. Whilst navigating through years of pain and discomfort, an incident on a vacation triggered a chain of events that ultimately led to long-awaited diagnoses of Mikulicz and Sjogren's, shedding light on the underlying autoimmune/rare diseases that were causing my health challenges.
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Through the numerous medical visits, tests, and procedures, and the online support groups, I've learned to advocate for myself, and others while seeking answers in the impossible.
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I stand as a testament to the power of perseverance and patient empowerment in the face of adversity.
Let's continue to share our stories, support one another, and drive progress in healthcare for a better future!
Alex Streczyn
In the summer of 2018, my life took an unexpected turn when a mysterious fibrous mass developed on the right side of my skull. This marked the beginning of my challenging journey with IgG4-Related Disease (IgG4-RD) Pachymeningitis, a condition that affected the meninges of my brain. Luckily, I was diagnosed in December of that year. This early diagnosis was life-saving.
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Navigating the intricacies of IgG4-RD deepened my understanding of the importance of connection, community, and science-based evidence in managing rare diseases.
Despite the physical and emotional challenges, my experience fueled a commitment to support others, foster a supportive network, and advocate for informed, resilient hope through the IgG4-RD community.