Content about Amyotrophic lateral sclerosis

LEXINGTON, Mass. — Drug maker Shire has started a research program focused on rare diseases and their effects on patients and healthcare professionals, the company said Monday.

Shire announced the launch of the Shire Rare Disease Impact Report, which includes surveys of patients, caregivers, physicians, payers and others in the United States and United Kingdom, with results expected in the first half of 2013.

NEEDHAM, Mass. — In the battle to find a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, scientists from Belgium have made a rare discovery: a new gene that influences survival time of ALS. The findings, reported in a recent issue of Nature Medicine, were funded in part by CVS/pharmacy and the ALS Therapy Alliance, a Boston-based nonprofit. The findings also confirm another recent study that identified the same pathway to finding a treatment for ALS.

WOONSOCKET, R.I. — CVS/pharmacy has announced the launch of a new in-store fundraising campaign, named Advancing Medical Research, to support medical research and help improve the quality of life for those living with amyotrophic lateral sclerosis and cystic fibrosis.
 
Funds raised through the campaign will benefit the ALS Therapy Alliance, an organization dedicated to advancing ALS research, and the Cystic Fibrosis Foundation. Supporters for the 2012 campaign can donate $1 or $3 at the register in CVS/pharmacy locations and online through June 30.

A CVS Caremark-sponsored study looking at in-person, electronic, telephone, fax and mail communications that counsel patients to stay on their medications found that pharmacists in a retail setting are the most influential healthcare “voices” in promoting medication adherence.


MOUNTAIN VIEW, Calif. — The Food and Drug Administration has granted orphan drug designation to an investigational treatment made by Edison Pharmaceuticals for rare diseases, Edison said Wednesday.

WHAT IT MEANS AND WHY IT'S IMPORTANT — Medication nonadherence is sort of similar to substance abuse: It’s a societal issue that stems from multiple causes and as such, probably will never completely disappear; however, it still can be mitigated. And because it stems from multiple causes, effectively combating it also requires multiple strategies.

ELMSFORD, N.Y. — Specialty pharmacy provider BioScrip has launched a Web service designed to connect healthcare professionals, patients and caregivers in order to help patients manage their medications and improve their overall care experience.

The website, myBioScrip.com, uses HealthyCircles, an online platform that enables people to use manage and share health information.

ALEXANDRIA, Va. — The drumbeat in support of an expanded universally recognized role for pharmacists in helping patients successfully manage their drug therapy is getting steadily louder.

MUMBAI, India The Food and Drug Administration has approved a generic version of a drug for a devastating muscular disorder.

Sun Pharmaceutical Industries announced Tuesday the approval of riluzole hydrochloride in the 50-mg strength. The tablets are used to treat amyotrophic lateral sclerosis or ALS, also known as Lou Gehrig’s disease.

The drug is a generic version of Sanofi-Aventis’ Rilutek, which has sales of around $50 million, according to Sun.

PITTSBURGH The Pittsburgh Business Group on Health’s LivingMyLife program, which helps diabetes patients with disease management through the use of “coach pharmacists,” will soon do the same for those with other diseases, according to published reports.

The Pittsburgh Tribune-Review reported Friday that LivingMyLife also would help patients with asthma and heart disease. The program, which began in 2006, allows patients to manage their disease with visits to pharmacies, mostly Giant Eagle, Kmart and some independents.