Complex Disorders Alliance

08/28/2026

Thank you, Cianna, for sharing your Why | Can’t Wait statement and for using your voice to advocate for the millions of people living with complex disorders.

Cianna lives with hypermobile Ehlers-Danlos syndrome (hEDS) and has navigated a complex medical journey that includes hip dysplasia, Chiari I malformation, craniocervical instability, shoulder instability, and many of the challenges that people living with complex disorders know all too well
Every story shared through this series is a reminder of why accelerating research matters. Behind every diagnosis is a person, a family, and a future waiting for answers
At CODA, we are committed to advancing rigorous, treatment-focused research that uncovers the biological mechanisms driving complex disorders. By studying the interconnected systems inderlying these conditions, we can help accelerate better diagnostics, more targeted treatments, and meaningful progress for patients.

Learn how you can support research for patients like Cianna:
https://www.complexdisorders.org/

08/26/2026

The CODA Vascular Initiative is advancing research to better understand how changes in blood flow, inflammation, and oxygen delivery may play a role in complex chronic disorders.

By uncovering these biological changes, researchers hope to better identify the patients affected and develop more targeted treatments that address the underlying drivers of illness.

Research like this is only possible because of supporters like you.

Help accelerate the CODA Vascular Initiative by making a gift today: https://hubs.la/Q04vp5kX0

08/24/2026

Research shows the profound impact complex chronic disorders can have on patients’ lives.

63% of people with ME/CFS are unable to work.¹
72% of people with POTS have had to modify their jobs.²

Behind these numbers are people with dreams for their careers, education, families, independence, and futures.

Those futures are what drive our work at CODA.

In her latest CEO blog, Amy Rochlin shares the urgency behind our mission and how CODA is bringing the leading experts in this field together to accelerate research and advance treatments that can meaningfully improve patients’ lives.

Chronic illness steals dreams. It’s time to give them back.
Read Amy’s latest CEO blog at the link in our bio or visit www.complexdisorders.org/ceo-blog

Sources:
¹ Diagnostics (2019)
² Journal of Internal Medicine (2021)

08/18/2026

Please welcome Lucy Haney as the newest participant in the CODA 50 Challenge.

Lucy lives with hEDS, MCAS, dysautonomia, narcolepsy type 1, and dynamic styloidogenic venous compression. Despite the challenges of living with complex chronic disorders, Lucy continues to turn her experience into action, helping advance the research needed to bring better answers and treatments to patients.

Thank you, Lucy, for being an active voice and standing alongside our community.

100% of donations raised for the CODA 50 Challenge makes research move faster to find better treatments for people who need them!

Support Lucy’s CODA 50 Challenge to fuel the research patients are waiting for: https://hubs.la/Q04tpH8n0

08/17/2026

This is an important piece from journalist, Jessica Slice, who
discusses her family's experience with PANS.

Her daughter, transformed from a vibrant little girl to developing excruciating widespread pain and sudden, severe neurological symptoms.

PANS is one of the most demonstrative neuroimmune conditions across complex chronic illness.

For many young children, infection - in this young girl's case, strep infection - can trigger a seemingly overnight biological response, driving neurological symptoms.

Treatments are indeed possible: antibiotics, IVIG, and other immunomodulatory therapies.

One Friday morning last fall, writer Jessica Slice’s eight-year-old daughter Rose woke up with a sore throat. At first, it felt like a minor cold, but over the next few days, she started to change. First, her arms and legs would suddenly and uncontrollably shoot out in front of her. Not long after, Rose said she felt like she was “vibrating inside.” Within a week, she began to wail for hours on end, threaten to harm herself and others, and displayed severe motor control problems.

But multiple doctors denied there was any medical issue, telling Slice to bring Rose to a psychiatrist instead. “I don’t know how long our pattern of ER visits and outpatient referrals might have continued had I not texted a group of friends that evening to share Rose’s story,” Slice writes. “One friend — a doctor — texted back an idea: “Have you looked into PANS?”

PANS, or “pediatric acute-onset neuropsychiatric syndrome,” is a form of brain inflammation caused by infection that affects an estimated one in around 12,000 children every year. A reliable test for the disease is still elusive, so diagnosis currently hinges on developing sudden-onset OCD or restrictive eating and at least two out of nine concurrent symptoms, which include aggression, motor abnormalities, and sleep changes. But there’s widespread medical skepticism surrounding the condition, and funding for research is sparse.

Splice writes about her fight to treat Rose and speaks to PANS patients and medical experts about their experience with the disease, the struggle to diagnose it, and the vocal community of physicians actively opposing the disease’s recognition: https://nymag.visitlink.me/5FU0Va

08/15/2026

Meet Tyler, Al Research Scientist at CODA.

Artificial intelligence (Al) is a key component of CODA’s precision medicine strategy. By bringing together longitudinal clinical data, multi-domain datient intormation, and scientitic literature, Al can help researchers uncover biological patterns, generate testable hypotheses, and identity mechanisms that may drive complex chronic disorders.

As CODA’s Al Research Scientist, Tyler develops Al systems designed to integrate these diverse data sources and translate biological insights into more targeted diagnostic and therapeutic strategies.

By combining Al With rigorous biological research and clinical expertise, CODA is working to accelerate scientitic discovery and move more quickly toward better diagnostics, targeted treatments, and improved outcomes for patients.

Learn more about CODA’s research programs:
www.complexdisorders.org/research-programs

08/12/2026

For the past eight years, Meg has been living with autoimmune autonomic ganglionopathy (AAG), along with MCAS, hypermobile Ehlers-Danlos syndrome (hEDS), POTS, and ME/CFS.

Like so many people living with complex chronic disorders, these illnesses have changed nearly every part of her life, making it difficult to participate in the moments, relationships, and future she once envisioned.

Meg is sharing her story because she believes patients deserve better. Better answers, earlier diagnosis, more effective treatments, and a future where people can get back to living the lives these illnesses have taken from them.

Every patient has a reason they can’t wait for research.

Thank you, Meg, for sharing your voice with the CODA community.

Help accelerate the research patients are waiting for:
https://www.complexdisorders.org/research-programs

08/10/2026

The Complex Disorders Alliance (CODA) is a sponsor of the 2026 International Scientific Long COVID & Post-Acute Infection Syndromes (ISLC-PAIS) Conference.

This international meeting brings together researchers, clinicians, patient organizations, policymakers, and advocates to advance research on Post-Acute Infection Syndromes and complex chronic disorders through scientific collaboration.

Amy Rochlin, CEO of CODA, will introduce Professor Resia Pretorius, Professor and Vice Dean: Research and Postgraduate Students at Stellenbosch University, whose research has advanced our understanding of vascular dysfunction and its potential role in complex chronic disorders.

Conferences like ISLC-PAIS create opportunities to share emerging research, strengthen scientific collaboration, and accelerate progress toward better diagnosis and more effective treatments for patients living with complex chronic disorders

Learn more: https://hubs.ly/Q04sszcF0

08/08/2026

Today, on Severe ME/CFS Awareness Day, we stand with the millions of people living with severe ME/CFS and help amplify the voices and experiences of o community that has been overlooked for far too long.

Severe ME/CFS is far more than chronic fatigue. Many people living with severe disease are confined to their homes or beds, unable to tolerate light, sound touch, or even the basic activities of daily life. Approximately 25% of people living with ME/CFS experience severe or very severe disease, underscoring the urgent need for greater awareness and investment in research.

This reel shares patient voices alongside educational facts to help raise awareness of the realities of severe ME/CFS. We are gratetul to for compiling the educational information and FAQs that helped inform this content and for their continued commitment to making reliable, patient-centered resources accessible.

Patients have waited too long for answers.

Invest in the Research Patients Are Waiting For:
www.complexdisorders.org/research-programs