ALS Multidisciplinary Clinic

Below is material that offers the most current information about ALS and ALS research, as well as opportunities to connect with other patients.


Mass General offers links to other useful resources.

ALS Information:

ALS Association (ALSA)
Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
www.alsa.org
Massachusetts Chapter
http://webma.alsa.org/site/PageServer?pagename=MA_homepage

ALS Therapy Alliance
Patient portion of the ALS Therapy Alliance's website focusing on their expertise and funding to advance their studies of amyotrophic lateral sclerosis.
http://alstherapyalliance.org/patients.html

Northeast ALS Consortium (NEALS)
Comprehensive ALS clinical trial database, clinical trials 101 information, and blog to keep patient and caregiver communities well-informed about clinical research, trial opportunities, and scientific advancements world-wide.
http://www.alsconsortium.org

Compassionate Care ALS
Organization dedicated to supporting pALS and their families through direct services, education, and equipment, while maintaining a holistic presence.
http://www.ccals.org/home.php

ALS Information at the National Institute of Health (NIH)
Comprehensive overview of ALS provided by MedlinePlus, a service of the U.S. National Library of Medicine.  Materials are also available in Spanish.
www.nlm.nih.gov/medlineplus/amyotrophiclateralsclerosis.html

National Institute of Neurological Disorders and Stroke
The primary NIH organization for research on Amyotrophic Lateral Sclerosis.
www.ninds.nih.gov

Muscular Dystrophy Association (MDA)
The MDA’s website contains sections on advocacy, clinical trials, support groups, research news, and more.
www.mdausa.org    
MDA/ALS
http://www.als-mda.org/disease/als.html

Mayo Clinic
Overview of ALS from the Mayo Clinic, a not-for-profit organization offering health information, self-improvement, and disease management tools to empower people to manage their health.
http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359

National Institute of Neurological Disorders and Stroke (NINDS)
ALS fact sheet provided by a research institute of the NIH dedicated to brain and nervous system disorders.
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm

National ALS Registry
The Center for Disease Control’s (CDC) growing registry of ALS patients to help improve understanding of who gets ALS and of factors that affect disease.
http://wwwn.cdc.gov/als/?s_cid=als_001

ALS Maine Telemedicine Program
Provides people with ALS living in Maine with improved access to highly specialized ALS care using state-of-the-art telemedicine.
http://www.massgeneral.org/als/maine.aspx

Connect with Others:

Northeast ALS Consortium (NEALS) Facebook and Twitter Accounts
Uniting PALS in an effort to advocate for and conduct critical clinical research in ALS.
Facebook:
http://www.facebook.com/NortheastALSConsortium
Twitter:
https://twitter.com#!/NEALSConsortium

Support Groups through the ALS Association - Massachusetts Chapter
Support groups for patients and caregivers are excellent forums for sharing information and receiving emotional support.
http://webma.alsa.org/site/PageServer?pagename=MA_8_SupportGroups&AddInterest=1584

fALS Connect
fALS Connect is an online registry for people with familial ALS with the stated goal of facilitating research in ALS to develop treatments and ultimately a cure for this disease. By creating an online account, participants agree to be contacted about potential research opportunities.  No identifying information is shared.
https://fals.patientcrossroads.org/

PatientsLikeMe
PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.
http://www.patientslikeme.com/
Follow company news on Twitter.com/PatientsLikeMe
and http://blog.patientslikeme.com

ALS Therapy Development Institute (TDI)
The ALS TDI’s community page includes events, an online forum, and social networking opportunities.
http://www.als.net/Community/

ALS Untangled
Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter, a social networking tool.
http://www.alsuntangled.com/index.html