To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
A gay 39-year-old entrepreneur from Mexico and a retired Jewish football player-turned-bank-CEO in the early stages of amyotrophic lateral sclerosis (ALS) come from different places and are in different stages of life. But through art, Octavio Molina and Ken Brenner have become fast friends, discussing life at its deepest…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
“Can you believe our little Fafa finished ninth grade?” I asked my husband, Todd, as I flushed his feeding tube. He laughed, and we took a trip down memory lane. Our daughter, Sara, gave herself the nickname. Before she was even 2, she said something like, “Fafa wants that.”…
CRISPR Therapeutics and Capsida Biotherapeutics have partnered to develop gene-editing therapies for familial amyotrophic lateral sclerosis (ALS) and Friedreich’s ataxia. Capsida specializes in designing virus-based means of delivering therapies to specific cells, while CRISPR’s expertise lies in gene-editing technology, particularly the CRISPR gene-editing system. “Bringing together…
Columns
Bearing Down With Equine Intent
“Welcome to my nightmare, whoa, “Welcome to my breakdown, “I hope I didn’t scare you …” If there were a “Welcome Wagon” function in the ALS community — whereby incumbent residents indoctrinated new arrivals — surely the introduction would resemble those lyrics from Alice Cooper. Grim statistics and personal…
Clene and its subsidiary Clene Nanomedicine are negotiating to increase their manufacturing capacity as they prepare to release findings — expected early next year — from a pivotal and enrolling Phase 3 trial of CNM-Au8 as an oral therapy aiming to slow amyotrophic lateral sclerosis (ALS) progression. Negotiations include the…
Columns
When Second Opinions Get Social
Lately, I’ve noticed a strange trend happening in several online ALS communities I belong to. I’ve seen an increase in posts from people who haven’t yet been diagnosed with ALS asking members of the group to essentially offer medical opinions. A typical post begins with a list of physical symptoms,…
Amylyx Pharmaceuticals is seeking approval, in Canada, of its lead candidate AMX0035 for the treatment of amyotrophic lateral sclerosis (ALS). This regulatory submission “represents a significant milestone in our efforts to develop a new treatment option for people living with ALS who have no time to wait,” Joshua Cohen, co-founder, co-CEO,…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
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