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Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology ...
More from Lambert-Eaton News
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2nd Firdapse Patent Secured in US by Catalyst with 3 Still Pending
Catalyst Pharmaceuticals has secured a second U.S. patent covering Firdapse (amifampridine), an approved oral treatment ... -
How the 5 Stages of Grief Helped Me Face My Daughter’s Health Crisis
I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one ... -
Nominations Open for 2022 Eurordis Black Pearl Awards
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. ... -
Educating Ourselves About ADA Helped Us Make an Informed Job Decision
A few weeks ago, I wrote about our daughter’s desire to get a summer job. ... -
Ruzurgi Available in Canada After Brief Interruption
Health Canada has re-issued its approval of Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in ... -
Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years
At its first virtual investor event, biotech company Centogene set a bold mission: to cure ... -
Catalyst, Dydo Strike Deal to Develop, Market Firdapse in Japan
Catalyst Pharmaceuticals has teamed up with DyDo Pharma to develop and commercialize Firdapse (amifampridine) in ... -
Finding Strategies to Slow Our Pace
I have spent most of my life in a rush. As someone with a Type ... -
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes ... -
Preparing for Upcoming Travel Helped Alleviate My Daughter’s Anxiety
Our family loves to travel. Thanks to the military, we have spent years raising our ... -
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged ... -
Patient-reported Data Reliable, Dutch Analysis Finds
Almost all people with Lambert-Eaton myasthenic syndrome (LEMS) have generalized symptoms at disease onset, according ... -
In a Weak Moment, One Nurse Made All the Difference
“I alone cannot change the world, but I can cast a stone across the waters ... -
Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European ... -
Finding the Right Resources to Help My Daughter With Her Job Search
As the days slowly lengthen and stretch before us, I am faced with new challenges ... -
Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the ... -
Plasma Exchange May Treat Lung Cancer-linked LEMS and PCD
Plasmapheresis, or plasma exchange, may be an effective way of managing small cell lung cancer-associated ... -
RARE-X, Broad Institute to Advance Rare Disease Research
RARE-X, a collaborative platform for patient-controlled data collection, global data sharing and analysis, is partnering ... -
A New Medication Has Given My Daughter Her Mornings Back
Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us ... -
Early Treatment Key in Rare LEMS Case Linked to Tumor in Larynx
The case of a man in whom a neuroendocrine tumor was found to be associated ... -
Engaging in Open Dialogue With Doctors Helps Us Make Informed Decisions
Most people in the rare disease community can relate to the constant march to various ... -
LEMS Likely Triggered by Rare Skin Cancer in Case Study
Lambert-Eaton myasthenic syndrome (LEMS) may be associated with a rare type of skin cancer called ... -
How We Decided to Change Our Daughter’s Medication Schedules
It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after ... -
Canadian Agency Recommends Ruzurgi Be Reimbursed with Conditions
The Canadian Agency for Drugs and Technologies in Health (CADTH) has recommended that Ruzurgi (amifampridine) ... -
These Tips Help Me Prepare for Our Next Doctor’s Appointment
For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), ... -
Global Data Standards Being Developed for Rare Disease Research
Global data standards for conducting research on rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS), ... -
We Have Found Accommodations That Make Life Easier for Our Daughter
As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn ... -
Quick Approval for COVID Vaccines a Concern, Rare Disease Patients Say
More than half of the people with rare diseases and their caregivers, asked in a ... -
We Have Learned to Celebrate the Little Victories
If anyone had told me three years ago how our life would look today, I ... -
EveryLife Scholarship Fund Open for Adults With Rare Diseases in US
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to ... -
Patients, Caregivers, Loved Ones Sought for Survey
The Mighty, a digital health community for people with health challenges and disabilities, is urging Lambert-Eaton ... -
We Recognized the Great Value in Community During the Pandemic
We are living in unprecedented times involving a pandemic and political and social unrest that ... -
Report Examines Pros, Cons of Orphan Drug Status
The Orphan Drug Act (ODA) has spurred the development of treatments for rare diseases, such ... -
How Books Inspire Us to Embrace Our Circumstances
The paths of those affected by Lambert-Eaton myasthenic syndrome (LEMS) hold many twists and turns. ... -
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
As anyone affected by a rare disease knows, treating the illness while trying to go ... -
I Acknowledge the Sadness and Then Count My Blessings
Eeyore from “Winnie the Pooh” has never been my favorite character. For most of my ... -
Development of Long-acting Firdapse on Track, Catalyst Says
Development of a new long-acting formulation of Firdapse (amifampridine) remains on track, according to Catalyst Pharmaceuticals, the ... -
The Fog of Uncertainty Lifted When My Daughter Was Finally Diagnosed
Many people with Lambert-Eaton myasthenic syndrome (LEMS) wait an extremely long time for a diagnosis. ... -
Spending on Rare Disease Treatments Such as LEMS Comparatively Low
In the U.S., treatments for rare diseases such as Lambert-Eaton myasthenic syndrome (LEMS) account for only ... -
Motion Analysis Helped Grace Get the Most Out of Physical Therapy
I have often said that we would try any treatment if it meant more mobility, ... -
Acknowledging the Loss From Chronic Illness Helped Us Emotionally Heal
I consider myself a pretty resilient person. My husband is in the U.S. Navy, and ... -
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is ... -
MedicAlert, NORD Partner to Help Patients in Emergencies
For the more than 25 million Americans living with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS), ... -
How Our Family Is Fighting Depression as Quarantine Continues
Our family started quarantining almost a year ago this week. Our daughter Grace has a ... -
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of ... -
Firdapse Developer Catalyst Will Hold Rare Disease Day Event on Feb. 26
Firdapse (amifampridine) developer Catalyst Pharmaceuticals is supporting Rare Disease Day 2021 by sponsoring and participating ... -
This Rare Disease Day, We’re Grateful for Those Who Came Before Us
It is humbling to know that we are the beneficiaries of those who have gone ... -
Rare Disease Day at NIH, Set for March 1, Growing Year by Year
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place ... -
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, ... -
Our Daughter Is Seeing Positive Results From Rituxan
Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely ... -
Pandemic Won’t Stop Rare Disease Day on Feb. 28
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 ... -
Connecting With Our Children in Meaningful Ways
When our daughter Grace began exhibiting troubling signs of muscle weakness at age 14, symptoms ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to ... -
Equine-assisted Activities Have Restored Joy in Our Daughter’s Life
We live with a thief lurking among us. Whether it is due to Lambert-Eaton myasthenic ... -
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ... -
LEMS Treatments Don’t Affect Calcium Channels, Study Finds
The molecule 3,4-diaminopyridine (3,4-DAP) — approved as Firdapse and Ruzurgi to treat people with Lambert-Eaton myasthenic syndrome ... -
Weighing the Pros and Cons of My Daughter’s IVIG Therapy
The first question I asked after my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome ... -
NORD’s Caregiver Respite Program Continues Through Pandemic
Caring for a loved one with a rare disease, especially during these uncertain times, demands ... -
Cancer Found After Death of LEMS Patient with Rare Immune-mediated Disorder
A positive SOX1 antibody test led to a post-mortem small-cell lung carcinoma (SCLC) diagnosis in ... -
Art Contest Salutes Creativity of Rare Disease Communities
Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare ... -
After My Daughter’s Diagnosis, I Put Off Taking Care of Myself
I love the expectation, hope, and anticipation that comes with the dawning of a new ... -
Rare Skin Cancer Patient’s LEMS Symptoms Ease With Antibody Treatment
Treatment with immunoglobulins, or antibodies — proteins that help fight off infections — successfully reduced ... -
As a Parent, Determining When to Step in to Help Is a Challenge
Raising a child with a physical disability can be a balancing act of sorts. It ... -
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences ... -
Fisher Syndrome Can Co-occur With Asymptomatic LEMS
Symptoms of Fisher syndrome can lead doctors to also diagnose asymptomatic Lambert‐Eaton myasthenic syndrome (LEMS), ... -
Living Purposefully in Our New Normal
Learning to live with a chronic illness takes some getting used to, and oftentimes adjustments ... -
Case Study Describes Cancer Immunotherapy Opdivo Leading to LEMS
A case report describes Lambert-Eaton myasthenic syndrome (LEMS) and cerebellar degeneration — deterioration in the ... -
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Ice Pack Test Eased Eyelid Drooping in Man With LEMS, Case Report Finds
The ice pack test — a simple procedure in which a bag filled with ice ... -
Digging for a Diagnosis
Our story starts with a whole lot of waiting. I have never claimed to be ... -
MDA Wants Neuromuscular Disease Patients to Have Early Access to COVID-19 Vaccine
The Muscular Dystrophy Association (MDA) is encouraging the U.S. Centers for Disease Control and Prevention ... -
We’re Staying Home for the Holidays
Christmas is by far my favorite time of the year. Holiday music, trimming the tree, ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
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Rare Case of Lung Cancer-linked LEMS Underscores Importance of Screening
A recent case study of a woman with Lambert-Eaton myasthenic syndrome (LEMS) linked to lung ... -
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
Firdapse Now Widely Available in Canada for Treating LEMS, KYE Pharmaceuticals Says
Firdapse (amifampridine) is now widely available in Canada as a treatment for adults with Lambert-Eaton ... -
Catalyst Given US Patent Covering Firdapse in Treating LEMS
The U.S. Patent and Trademark Office has issued a new patent to Catalyst Pharmaceuticals covering the ... -
NSF Funds Project to Make Better Computer Simulation of Nerve-muscle Communication
A $750,000 grant from the National Science Foundation will fund a project to build a ... -
Newly Funded UNC Computer Simulations Could Help Find LEMS Treatments
An $86,880 grant from the National Science Foundation will support the development of computer simulations ... -
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ... -
Ruzurgi Now Available in Canada for Patients Ages 6 or Older
Ruzurgi (amifampridine), an oral treatment for Lambert-Eaton myasthenic syndrome (LEMS), is now available to Canadian ... -
Ruzurgi Now Available in Canada for Patients Ages 6 or Older
Ruzurgi (amifampridine), an oral treatment for Lambert-Eaton myasthenic syndrome (LEMS), is now available to Canadian ... -
How a Concussion Led to a Near-death Experience
Last in a series. Read part one. People often are sympathetic when they discover I ... -
How a Concussion Led to a Near-death Experience
Last in a series. Read part one. People often are sympathetic when they discover I ... -
My Concussion Worsened Instead of Getting Better
Friday, Sept. 18 is National Concussion Awareness Day. To raise more awareness of how dangerous ... -
My Concussion Worsened Instead of Getting Better
Friday, Sept. 18 is National Concussion Awareness Day. To raise more awareness of how dangerous ... -
Wait Between Repeat Nerve Stimulation Tests in LEMS, Researcher Advises
When monitoring Lambert-Eaton myasthenic syndrome (LEMS) patients, physicians should wait at least 150 seconds between ... -
Wait Between Repeat Nerve Stimulation Tests in LEMS, Researcher Advises
When monitoring Lambert-Eaton myasthenic syndrome (LEMS) patients, physicians should wait at least 150 seconds between ... -
Catalyst, KYE Agree to Commercialize Firdapse for Adult LEMS Patients in Canada
Catalyst Pharmaceuticals and KYE Pharmaceuticals have reached an exclusive agreement that will enable KYE to commercialize ... -
Catalyst, KYE Agree to Commercialize Firdapse for Adult LEMS Patients in Canada
Catalyst Pharmaceuticals and KYE Pharmaceuticals have reached an exclusive agreement that will enable KYE to commercialize ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
Health Canada Approves Ruzurgi for LEMS Patients Ages 6 or Older
Health Canada has approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in ... -
Health Canada Approves Ruzurgi for LEMS Patients Ages 6 or Older
Health Canada has approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
Firdapse Approved in Canada to Treat People With LEMS
Health Canada has approved the use of oral Firdapse (amifampridine) to treat people with Lambert-Eaton myasthenic syndrome ... -
Firdapse Approved in Canada to Treat People With LEMS
Health Canada has approved the use of oral Firdapse (amifampridine) to treat people with Lambert-Eaton myasthenic syndrome ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
Test Helps Assess Carpal Tunnel Syndrome in LEMS, Case Report Shows
A post-exercise facilitation test, which measures muscle activity following voluntary muscle contraction or electrical stimulation, ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
Scientists Validate New Tool for Estimating Cancer Risk in LEMS Patients
A new scoring tool can be used to effectively estimate the risk of developing small cell ... -
Specific Response Pattern to Nerve Stimulation May Help Diagnose LEMS
People with Lambert-Eaton myasthenia syndrome (LEMS) have a specific response pattern to repetitive nerve stimulation ... -
Singer Lukas Nelson Convinced Me to Build a Simple Garden
Music has always been my escape. One Christmas after I had back surgery as a ... -
Singer Lukas Nelson Convinced Me to Build a Simple Garden
Music has always been my escape. One Christmas after I had back surgery as a ... -
Researchers Studying Cause of Autoimmune Diseases Awarded $1.95M Grant
A $1.95 million federal grant has been awarded to researchers investigating the underlying cause of ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
Autoantibodies Targeting GRP78 Protein May Cause PCD in LEMS
Autoantibodies against a protein called GRP78 may lead to paraneoplastic cerebellar degeneration (PCD) in people with Lambert-Eaton ... -
LEMme Tell Ya About the Unexpected Benefits of Medicinal Cannabis
Second in a two-part series. Read part one. Pain management with cannabis takes conscientious planning ... -
LEMme Tell Ya About the Unexpected Benefits of Medicinal Cannabis
Second in a two-part series. Read part one. Pain management with cannabis takes conscientious planning ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
LEMS-associated Respiratory Problems May Lead to Heart Dysfunction, Case Report Shows
Lambert‐Eaton myasthenic syndrome-associated diaphragm weakness and subsequent respiratory problems may impair heart function, a case ... -
LEMme Tell Ya About Medical Cannabis for Pain Relief
First in a two-part series. I am certain my children never thought they would see ... -
LEMme Tell Ya About Medical Cannabis for Pain Relief
First in a two-part series. I am certain my children never thought they would see ... -
Video Games Connect Chronically Ill Children Isolated at Home, Hospital
Dara Riva always had a rule that her 10-year-old son could play video games only ... -
Catalyst Still Expecting Firdapse Approval in Canada in 2020
Despite the COVID-19 pandemic, Catalyst Pharmaceuticals is still expecting Firdapse (amifampridine) to be approved for the ... -
‘LEMme Tell Ya’ Patient Stories in Their Mothers’ Words: Lori Dunham
Every year since my Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in 2016 has brought unexpected experiences. ... -
‘LEMme Tell Ya’ Patient Stories in Their Mothers’ Words: Lori Dunham
Every year since my Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in 2016 has brought unexpected experiences. ... -
Good Long-term Outcomes Seen in Japanese Study, Regardless of Cancer
Japanese patients will Lambert‐Eaton myasthenic syndrome (LEMS) show long-term neurological improvements with treatment regardless of ... -
Honoring Motherless Daughters and Those Who Raised Us
Editor’s note: This column briefly discusses suicide. Another Mother’s Day is almost upon us. How ... -
Pregnancy and LEMS
Lambert-Eaton myasthenic syndrome (LEMS) is a rare autoimmune disease characterized by muscle weakness, among other ... -
Lower Electromyography Threshold Improves Accuracy of LEMS Diagnosis, Study Suggests
Increments, or increases in nerve responses, greater than 60% in electromyography (EMG) recordings upon short ... -
Recovery Is a Long Road Following My Concussion
When I was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in 2016, I quickly learned that ... -
Recovery Is a Long Road Following My Concussion
When I was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in 2016, I quickly learned that ... -
A Cautionary Tale About Hydroxychloroquine’s Side Effects
It seems that one can’t turn on the news, scroll through Twitter, or read Facebook ... -
A Cautionary Tale About Hydroxychloroquine’s Side Effects
It seems that one can’t turn on the news, scroll through Twitter, or read Facebook ... -
Catalyst Pharmaceuticals Confirms Sufficient Supply of Firdapse
In a business update amid the COVID-19 pandemic, Catalyst Pharmaceuticals said it has ample supplies ... -
LEMS and Exercise
Lambert-Eaton myasthenic syndrome (LEMS) is a rare autoimmune disease characterized by the immune system mistakenly ... -
The Importance of Being Mindful During COVID-19
The cold surface felt good on my cheek. I turned my head to the other ... -
The Importance of Being Mindful During COVID-19
The cold surface felt good on my cheek. I turned my head to the other ... -
Experts Publish Guidance on Managing MG and LEMS During COVID-19 Pandemic
A group of experts have provided a series of recommendations for people with myasthenia gravis ... -
How to Stay Motivated With a Chronic Disease Like LEMS
Because only about 400 people live with Lambert-Eaton myasthenic syndrome (LEMS) in the U.S., it’s ... -
Mindfulness for People with LEMS
Symptoms of chronic diseases such as Lambert-Eaton myasthenic syndrome (LEMS) can present real challenges to ... -
Catalyst Expects No Supply Problems for Firdapse Due to COVID-19
Catalyst Pharmaceuticals says the COVID-19 pandemic is not likely to affect North American supplies of ... -
Building Emotional Resilience When You Have LEMS
Emotional resilience is a term used to describe how people respond to changes in life ... -
Timely Treatment Can Be Successful for LEMS Linked to Lung Adenocarcinoma, Case Study Suggests
Timely cancer treatment helped stabilize a 63-year-old man for more than six years who had ... -
Importance of Support Networks for Patients with LEMS
Developing and maintaining a good support network is important for physical and mental health. Positive ... -
Staying Safe and Surviving Social Distancing During Challenging Times
I’ve never struggled more with writing a column. How does one write a column for ...