Helpful guides and community insights for patients and caregivers
Created by people who understand the rare disease journey, these guides are designed to help you feel more informed, supported, and less alone.
At the Time of Diagnosis
Understanding B Cell Lymphoma: A Guide
for Patients and Caregivers
A diagnosis of Large B-Cell Lymphoma can turn life upside down. It’s common to feel overwhelmed, frightened, or unsure about what lies ahead — especially when treatments don’t go as planned.
The good news is that many effective options exist today, even for relapsed or refractory lymphoma. New therapies continue to offer hope, control, and meaningful possibilities for the future.
This guide is designed to support you with clear information, compassionate guidance, and reassurance — so you can feel more informed, empowered, and less alone on your journey.
When Treatment Changes
When Lymphoma Comes Back: Understanding Your Treatment Options
When lymphoma returns after treatment or does not respond as expected, it can feel overwhelming. Many patients and families have questions about what comes next and what options may still be available.
This guide helps explain treatment options for relapsed or refractory lymphoma, including aggressive types such as Diffuse Large B-Cell Lymphoma (DLBCL) and follicular lymphoma. It offers clear, patient-friendly information to support conversations with your healthcare team and help you better understand possible next steps in care.
Understanding Rare Immune Conditions
Living With APDS: What Patients and Caregivers
Should Know
Living with Activated PI3K Delta Syndrome (APDS) often means navigating frequent infections, complex symptoms, and a long path to diagnosis.
This guide provides a clear and compassionate overview of APDS — including how it affects the immune system, common warning signs, diagnostic testing, and available management strategies. Created for patients and caregivers, it aims to support understanding, empower advocacy, and help families feel more confident as they move forward.
Understanding the Diagnostic Journey
Why Primary Immunodeficiencies Are Often Missed
Many people living with primary immunodeficiencies (PIDs) experience years of unexplained symptoms, repeated infections, or incorrect diagnoses before receiving answers.
This guide helps patients and caregivers understand why PIDs are often misdiagnosed, highlights commonly overlooked conditions, and explains practical steps that can support earlier and more accurate diagnosis — empowering families to advocate for the care they deserve.
Real-World Insights from the LGS Community
The LGS Patient Experience: Voices of Patients and Caregivers
Living with Lennox-Gastaut syndrome (LGS) can be overwhelming for both patients and caregivers.
Based on input from more than 1,300 LGS families, this report explores real-world experiences with diagnosis, seizure management, treatment challenges, and daily life. It brings together authentic caregiver voices to offer understanding, validation, and connection — helping families feel less alone and more supported.
Sleep & Daily Life With LGS
Understanding Sleep Challenges in Lennox-Gastaut Syndrome
Sleep can feel like one of the hardest parts of living with Lennox-Gastaut Syndrome — for both individuals with LGS and the people who care for them.
Based on insights from more than 500 parents and caregivers, this guide explores the real-life sleep challenges faced by LGS families, including nighttime seizures, disrupted routines, caregiver exhaustion, and emotional strain. It also shares practical strategies, lived experiences, and words of reassurance from others who understand what it means to face long nights with strength and love.
This resource is designed to help families feel seen, supported, and less alone — offering understanding, encouragement, and gentle guidance toward better sleep and well-being.
Real-World Insights from the Dravet Community
The Dravet Syndrome Patient Experience: Voices of Patients and Caregivers
Living with Dravet syndrome can be overwhelming for both patients and the people who care for them. Based on insights from more than 490 caregivers, this report shares real-world experiences with diagnosis, seizures, daily challenges, treatment decisions, and quality of life. By amplifying the voices of families affected by Dravet, this resource aims to provide understanding, validation, and reassurance — reminding caregivers that they are not alone on this journey.
Real-World Insights from the TSC Community
The TSC Patient Experience: Voices of Patients and Caregivers
Living with tuberous sclerosis complex (TSC) can be overwhelming — from early diagnosis and seizure management to the long-term impact on daily life and quality of life.
Based on input from more than 950 patients and caregivers, this report shares real-world experiences across diagnosis, symptoms, treatments, and the emotional challenges families face. It brings together data, lived experiences, and patient voices to help families feel better understood, more informed, and less alone on their journey.