Lambert-Eaton News

September 14, 2021September 14, 2021

New Institute Aims to Leave No Rare Disease Patient Behind

Lambert-Eaton News

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest ... Read more

September 10, 2021September 10, 2021

Group Focuses on Rare Disease Clinical Trial Participation

Lambert-Eaton News

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running ... Read more

September 7, 2021September 7, 2021

Report: Use Multiple Tests to Find LEMS Antibodies

Lambert-Eaton News

Immunofluorescence, a technique that can be used to detect antibodies associated with Lambert-Eaton myasthenic syndrome (LEMS), was negative in a 72-year-old woman, but another technique — called immunoblot — was ... Read more

August 31, 2021August 31, 2021

‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon

Lambert-Eaton News

The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both ... Read more

August 24, 2021August 24, 2021

‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases

Lambert-Eaton News

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The ... Read more

August 17, 2021August 17, 2021

Register Now for Global Genes’ RARE Patient Advocacy Summit

Lambert-Eaton News

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending ... Read more

August 10, 2021August 10, 2021

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

COVID-19 News, Lambert-Eaton News

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for ... Read more

August 5, 2021August 5, 2021

Advocates Lobby US Congress During Virtual Rare Disease Week

COVID-19 News, Lambert-Eaton News

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the ... Read more

August 3, 2021August 3, 2021

LEMS Patient Positive for Cancer Marker, But Shows No Sign of Tumor

Lambert-Eaton News

A woman with Lambert-Eaton myasthenic syndrome (LEMS) twice tested positive for a rare but high-risk blood marker of cancer, called type 2 antineuronal nuclear antibody (ANNA-2), while no tumor was ... Read more

July 27, 2021July 27, 2021

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

Lambert-Eaton News

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other ... Read more

July 23, 2021July 23, 2021

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

Lambert-Eaton News

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies ... Read more

July 20, 2021July 20, 2021

2nd Firdapse Patent Secured in US by Catalyst with 3 Still Pending

Lambert-Eaton News

Catalyst Pharmaceuticals has secured a second U.S. patent covering Firdapse (amifampridine), an approved oral treatment for Lambert-Eaton myasthenic syndrome (LEMS). “We are pleased that this second patent for Firdapse has ... Read more

July 13, 2021July 13, 2021

Nominations Open for 2022 Eurordis Black Pearl Awards

Lambert-Eaton News

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work ... Read more

July 6, 2021July 6, 2021

Ruzurgi Available in Canada After Brief Interruption

Lambert-Eaton News

Health Canada has re-issued its approval of Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in patients 6 and older. The decision comes two months after the Federal Court in Canada ... Read more

July 1, 2021July 1, 2021

Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years

Lambert-Eaton News

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, ... Read more