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Family of Rare Disease Child Has Much to Navigate

Over half my life just to diagnose Endometriosis

Advocating for Bone Marrow Donations and Clinical Trials in Leukemia

Advocating for Women’s Health Research and Equity

Young Black Woman faces gaslighting and discrimination

Ignoring Stroke Symptoms Almost Killed Me

Desperate for Alternative Medicine Options

Multiple Diagnoses Bankrupt a Family

Pulmonary Arterial Hypertension changed my life

PMDD is serious and misunderstood

They took his opioids, he took his own life

Mental health a consequence of autoimmune disease

Do Inpatients have the right to go outside for a break?

Multiple Invisible Diagnoses: Misdiagnosed & Misunderstood

Rare Disease patient advocating for disability rights

Why Can’t I Get the Treatment My Doctor Wants

Fibromyalgia changed my destiny

30 Years to Diagnosis…and I’m a Nurse!

My kids with rare diseases – finding grace

After failing all medications, I ended up with a J Pouch

Catastrophic medical bill barely averted

Breast Implant Illness: Need for informed consent

Healthcare isn’t easier for providers who become patients

Peripheral Neuropathy: A Homeopathic Approach

No one should go through a major diagnosis alone

Fibromyalgia: Need for health literacy and support

If T1D doesn’t kill me, our healthcare will

Health Literacy Will Help Us All

My Story of Lyme

Chronic Regional Pain Syndrome: See What We Feel

Food Allergies: anxiety and isolation

Cystic Fibrosis and the Great White Way

My Lupus and My Disabled Son

Navigating a Rare Disease Led to Finding a Greater Sense of Purpose

There is no “good” cancer

Fibromyalgia: fighting for the small guy

Duchenne: HIS life is OUR life

Multiple diagnoses and a passion for community

Fibromyalgia and finding my purpose

Despite it all, Saida fights for all of us

Ankylosing Spondylitis & Step Therapy

Thriving While Disabled with FND

A year and 2 surgeries to get through step-therapy

3 Weeks to Live: An ‘Adventure’ in Cancer

My Eyes, My Purpose

Hypermobile Ehlers Danlos Syndrome – care must be easier

What is the next step for a disease with no cure?

IBD: Meeting the need for peer to peer education

Short Stories about Long Covid

Decades to Get a Diagnosis

Harassed, Abused, and Kicked out of the Emergency Room

Conquering Fear – Gastroparesis

OCD, Overcoming Mental Health Stigma, and Finding the Treatment I Needed

Disagreeing With Doctor’s Notes and Assessments

Nineteen Years of Dismissal Almost Killed Me

Stuck Without Access to Transportation

Learning To Advocate With Instead of For

Battling Seizures Nearly Every Day

Sickle Cell Disease – from Birth to Advocacy

Determined to Not Let Sickle Cell Win – for my Daughter

Ulcerative Colitis, then Cancer, but I’m Still Here

The Persecution of Chronic Pain Patients Births an Advocate

Scleroderma and My Journey to Legislative Advocacy

A Long Gray Journey to Light With Scleroderma

Twenty-three Years Before Figuring out She had Sickle Cell

Denied by Insurance, CF Patient Finds Her Own Treatment

Veteran finds out he has MS after he is discharged

Migraine, Fibromyalgia, and Why SSDI Is So Important

Undiagnosed Lyme Stole My Childhood

When Treatment is not in the Patient’s Best Interest

Too Young, Too Rare, Dismissed

Bringing Ostomy Patients Together

Scleroderma taught me to accept help and to give it

Under 40s – Perform Your Breast Self-Examinations

In Fibromyalgia, one size does not fit all – I would know

Step Therapy has Caused Me Years of Serious Health Issues

Turner Syndrome: “I’m not going to let you die”

Had to Quit Being a Firefighter, But Became a Fighter for Patients

My ulcerative colitis drives me to help others

Insurance Blocks Access Rather Than Eases It

Avery’s Hope: Vast Needs of a Rare Disease Family

Scleroderma: Horrible Disease, Rare Gift

A Medical Oddity with Migraine – Making the Most

Avery’s Hope: a nonprofit model for those starting out

Surgery Cancelled on day of, due to Prior Authorization

Lupus in Men – How One Such Man is Leading a Community

Lupus Patient Builds a Support Community

Hydrocephalus patient orphaned – I learned to advocate for myself

Chronic Pain & Overcoming Ableist Rhetoric

Copay Accumulator program now costs me $3000 a month!

New Citizen Gets Hit with Surprise Billing

Sisters Hannah and Bethany Advocating for Heart Health

Once I was invisible, now I’m visible

PBM Switching My Drugs Without My Doctor’s Permission

Despite the pain, I carry on

Migraine, Chronic Pain, and Struggling to be Visible

Three Lessons Migraine Advocates Should Know

Myasthenia Gravis: Was It Really Invisible?

Chronic Illness: Dying or Finding Your Purpose

Rights Dignity Love and Care for Disabled People

Migraine – a Need for Hope, a Voice of Support

A System Set-up to Keep Me in Pain

Caregiving and Navigating Education with Disability

A life with fibromyalgia and a hopeful future

The Mistreatment of an Elderly Woman of Color

Step Therapy and Arthritis – a long journey

SMA: “Your son won’t see his first birthday”

Veteran and cancer survivor, living with chronic pain

Finding my migraine diagnosis through a forest of gaslighting

Finding the right doctor – dementia meets fibromyalgia

Too Easily Misdiagnosed: Mucous Membrane Pemphigoid

Can’t Add Years to His Life, So We Will Add Life to His Years: Duchenne MD

Staying Alive with Scleroderma

Gastroparesis made me adjust my expectations for life

Teacher for 32 years, Fibromyalgia took it all

“Suicide Headache” and how I live with them

My Life with Spinal Muscular Atrophy

Healthcare System Fails Professionals Too (TW: infant death)

RN forced to try meds known-to-fail for 12 months

Prior Auth, Step Therapy, and Copay Accumulators in DC

The Genetic Diabetic Uses Her Blog to Be Uplift Her Community

Spent Her 20s Fighting Insurance Companies

For Amelie, Each Day is a Gift

Using my mobility aid just to be taken seriously by doctors

Lupus – dead woman walking

Letting Art Into My Life

Advancing Access to Precision Medicine

Organically Grown Advocate – Harmed by Breast Implants

2-time Stroke Survivor told by doctor, “I Can’t Afford to See You”

Prader-Willi-Syndrome: fight for my son, fight for my community

A Family of Color Repeatedly Misdiagnosed and Mistreated

For Jim: Advocating for Cancer Patients Everywhere

Michiganders Need Copay Accumulator Reform

X-Linked Hypophosphatemia Robbed by Copay Accumulator practice

From Feeling Alone with IBD to Building Communities with IBD

Young Lupus Patients Need a Voice Too

Crohn’s Disease and Ostomy Warrior Working to Help all IBD Patients

Smiling Despite the Pain

Covid made it hard to get the surgeries I needed

Cancer took my husband and my siblings – that is why I advocate

Dire Need for Trauma Awareness in Providers

X-Linked Hypophosphatemia and Copay Accumulators

Step therapy and Crowning Lupus

Neuromyelitis Optica Spectrum Disorder and Step Therapy

Mitochondrial disease led me to create Rare New England

Mitochondrial in Minnesota

Copay accumulators rob treatments from Michigan patients

Trying to empower and educate others like myself

The long road to acceptance

Where I find hope despite a corrupt healthcare system

In jail because they couldn’t pay ambulance fee

Migraine led her to a life of advocacy

Cancer is not a death sentence

My own disability woke me up to a life of advocacy

Devics Disease Is Not Multiple Sclerosis

Devic’s Disease: Knocked down, I got back up

The Long Arm of the Opioid Crisis: Suffering Untreated

Gaslighting Mental/Emotional Health

My Autoimmune Diseases and disappointment in Western medicine

A Life Defined by Caregiving and Advocacy

Coming to terms with surgery improved my IBD

Nearly 10 years to get an accurate diagnosis

MS, American v Argentinian health care, and great family support

Familial Adenomatous Polyposis – my life as a polyp

Lynch Syndrome, colon cancer, but still alive and kicking

Step therapy interfered with my bone loss treatment

Fibromyalgia stole my Olympic dream

Duchenne Muscular Dystrophy – fighting for what’s right

More than one diagnosis at a time – Looms4Lupus

The argument for more research funding for migraine disease

Psoriasis and what made me an advocate

For the 60 million Americans with allergies and asthma

PIVOT and life after cancer

Congenital Diaphragmatic Hernia and Shane

For John – putting patients at the heart of research

Intravenous Immunoglobulin for life – a good life

PKU, still a long way to go

From Juvenile RA to adult RA – the many obstacles to care

Providers keep delaying my need for pain relief

As a woman of color with psoriasis, I have to self-advocate

Multiple Myeloma and Step Care Sequencing

Copay Accumulator Adjustment Programs: Anti-Patient Practice

Living in Constant Pain – Where is the help?

Hearing loss may have shaped me, but it has not defined me

Assisted Living Residence vs Personal Care Home: What’s the difference?

Lupus: we are the CEOs of our bodies

Living with an Eating Disorder

Migraine, Mental Health, and Gaslighting

Medical Gaslighting had me doubting my disease

Occipital Neuralgia pain – treatment hard to find

Chronic pain and how it changed my life

What decades of caregiving have taught me

Arginase Deficiency: my child and grandchild

Discrimination against me for my chronic pain

Medicaid saved my life from cancer

Engage patients in research – for John

Going Miles for Migraine

Ignored and dismissed in the ER

I’m a “Dadvocate” with a rare disease

Cluster headaches and CMS undermines treatment

Psoriasis, Step Therapy, Community, Advocacy

Oral Parity in multiple myeloma treatment

Step Therapy wasted a year of my life

Choosing a job based on health insurance

Racial discrimination in my migraine care

A legacy in wood work

Multiple Myeloma helped refine my voice as an advocate

COPD and how it led me to Advocacy

Carrying the cost of MoyaMoya Disease

Epidermolysis Bullosa and why I advocate

In pain, but pain doctors won’t help

Depression: Setting an example for my kids

MS – I do this for my dad

Ten Minutes for MS

Cancer and a Love of Star Wars

Child born with rare disease now old enough to give back

Fighting to be by her father’s side during the pandemic

Joy Helping Other Cope with Lupus

Their disbelief may have caused her cancer

Bullied because of her rare disease

Disabled and Fighting with Medicare and Medicaid

Forced off a working therapy

Intersecting Art and Advocacy

Finding Inspiration in 17+ Years of Neuralgia

Protecting the Privacy of Patients

My greatest curse, my greatest blessing

Occipital Neuralgia and my dog

Occipital Neuralgia – filling a void

empower patients with health literacy

From Trauma to Triumph with Diabetes

The system isn’t built for rare diseases

ALS and a better life for my son

Kimberly, Reynaud’s and suprise billing

My Diagnosis – so close, so far away

Step Therapy Left Me With Chronic Pain

It’s…frustrating. I’ve now got to pay large bills myself

6 years fighting for a drug approval for duchenne MD

Knowing that there is someone battling the system for me

Helping make a change for other diabetics

Advocate for those suffering with PMDD

I Fight for My Dad

Latest Updates

New patient story by Toby Lunstad published on December 4, 2023.

New patient story by Chelsea published on November 6, 2023.

New patient story by Mel published on June 26, 2023.

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