Hope, Help & Healing
You Don’t Have to Navigate This Journey Alone
Living with a chronic illness can feel overwhelming.
Whether you’ve been newly diagnosed, have been living with your condition for years, or are supporting someone you love, having access to reliable information and a supportive community can make all the difference.
Throughout my journey with Crohn’s Disease and Myasthenia Gravis, I’ve learned that knowledge is powerful, community is healing, and support can be life-changing.
This page is dedicated to organizations, resources, and support networks that provide education, advocacy, guidance, and hope for individuals and families affected by chronic illness, autoimmune disease, rare diseases, and invisible disabilities.
I encourage you to explore these resources and remember that asking for help is not a sign of weakness—it’s a sign of strength.
Advocacy & Support Organizations
Crohn’s & Colitis Foundation of America
The leading nonprofit organization dedicated to improving the quality of life of people living with Crohn’s Disease and Ulcerative Colitis through research, education, support, and advocacy.
🔗 https://www.crohnscolitisfoundation.org
Myasthenia Gravis Foundation of America (MGFA)
Dedicated to improving the lives of individuals affected by Myasthenia Gravis through education, support, advocacy, and research.
Autoimmune Association
Leading the fight against autoimmune disease through advocacy, awareness, education, and research.
Global Healthy Living Foundation
Focused on improving the lives of people living with chronic illnesses through patient empowerment and advocacy.
National Organization for Rare Disorders (NORD)
Supporting individuals and families affected by rare diseases through education, advocacy, and patient resources.
Invisible Disabilities Association (IDA)
Dedicated to educating, connecting, and encouraging people living with invisible disabilities while increasing public awareness and understanding.
🔗 https://invisibledisabilities.org
Girls With Guts
Empowering women living with Crohn’s Disease, Ulcerative Colitis, ostomies, and digestive diseases through education, connection, and support.
🔗 https://www.girlswithguts.org
Financial Assistance Programs
Managing a chronic illness can be emotionally, physically, and financially challenging. These organizations may help ease some of the financial burden.
Patient Advocate Foundation
Case management, insurance navigation, and financial aid programs.
🔗 https://www.patientadvocate.org
HealthWell Foundation
Financial assistance for medications, insurance premiums, and treatment-related expenses.
🔗 https://www.healthwellfoundation.org
PAN Foundation
Provides financial support for treatment and medication costs.
🔗 https://www.panfoundation.org
NeedyMeds
Medication discounts and healthcare assistance resources.
Medication Assistance Programs
RxAssist
Information on pharmaceutical company patient assistance programs.
RxHope
Helps patients access prescription assistance programs.
GoodRx
Prescription discount programs and medication price comparisons.
Partnership for Prescription Assistance
Connects patients to programs that may reduce medication costs.
Disability & Workplace Resources
Job Accommodation Network (JAN)
Free guidance on workplace accommodations and disability rights.
Social Security Administration (SSA)
Information regarding Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Disability Rights Education & Defense Fund (DREDF)
Disability rights education and advocacy resources.
Americans with Disabilities Act (ADA)
Information regarding workplace protections and reasonable accommodations.
Sleep Apnea Resources
For many individuals with chronic illness, quality sleep can be a challenge. These organizations provide education and support for sleep disorders.
American Sleep Apnea Association
Education, advocacy, and support for those living with sleep apnea.
Sleep Education
Educational resources from the American Academy of Sleep Medicine.
Apnea Board
Peer support and PAP therapy resources.
Women’s Health & Menopause Resources
The Menopause Society
Evidence-based menopause education and treatment information.
Office on Women’s Health
Comprehensive women’s health resources and education.
🔗 https://www.womenshealth.gov
HealthyWomen
Health information and advocacy for women across all stages of life.
🔗 https://www.healthywomen.org
Caregiver Support Resources
Caregivers need support too. These organizations provide resources, education, and encouragement for those caring for loved ones.
Family Caregiver Alliance
Caregiver Action Network
🔗 https://www.caregiveraction.org
AARP Family Caregiving
🔗 https://www.aarp.org/caregiving
Books & Recommended Reading
Chronic Illness & Resilience
📚 How to Be Sick — Toni Bernhard
📚 The Invisible Kingdom — Meghan O’Rourke
📚 When the Body Says No — Gabor Maté
Crohn’s Disease & IBD
📚 What Doesn’t Kill You — Tessa Miller
📚 Crohn’s and Colitis for Dummies — Tauseef Ali, MD
Caregiving & Emotional Wellness
📚 The Caregiver’s Survival Handbook — Alexis Abramson
📚 Option B — Sheryl Sandberg & Adam Grant
Podcasts & YouTube Channels
Chronic Illness & Autoimmune Disease
🎙️ The Autoimmune Hour
🔗 https://understandingautoimmune.com
🎙️ Invisible Not Broken
🔗 https://invisiblenotbroken.com
Crohn’s Disease & IBD
🎙️ About IBD Podcast
Myasthenia Gravis
🎙️ MGFA Podcasts
🎥 MGFA YouTube Channel
🔗 https://www.youtube.com/@MyastheniaGravisFoundation
Share Your Story & Get Involved
One of the most powerful ways we create change is by sharing our stories.
These organizations provide opportunities for patients to contribute their experiences, participate in research, and become advocates.
The Mighty
Rare Patient Voice
🔗 https://rarepatientvoice.com
PatientsLikeMe
🔗 https://www.patientslikeme.com
Emergency Resources & Crisis Support
If you are experiencing a mental health crisis or need immediate support, please reach out.
988 Suicide & Crisis Lifeline
Call or Text: 988
Crisis Text Line
Text HOME to 741741
🔗 https://www.crisistextline.org
SAMHSA National Helpline
1-800-662-HELP (4357)
National Alliance on Mental Illness (NAMI)
A Message From Kia
When I was searching for answers, I often felt overwhelmed, frustrated, and alone.
What I’ve learned through my journey with Crohn’s Disease and Myasthenia Gravis is that community matters.
Support matters.
Being understood matters.
My hope is that the resources on this page help you find information, encouragement, and connection.
Most importantly, I hope they remind you of something I say often throughout The Dual Diagnosis Diaries:
You are not alone.
There is hope.
There is help.
There is healing.
With hope,
Kia
Founder, The Dual Diagnosis Diaries
Educating. Advocating. Inspiring. One story at a time.
The Dual Diagnosis Diaries | Kia’s Journey 💜 