The Inclusion Body Myositis Registry at Yale

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The Inclusion Body Myositis Registry at Yale

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from The Inclusion Body Myositis Registry at Yale, 60 College Street, 3rd Floor (HPM), P. O. Box 208034, New Haven, CT.

We are a team of researchers and physicians dedicated to helping all involved with IBM by providing informational and practical tools to patients and their families, as well as establishing platforms to support clinical and scientific IBM research.

05/27/2025

The Inclusion Body Myositis Disease Registry at Yale is a collaborative initiative between the Yale School of Public Health, medical professionals and proactive people with IBM.

05/02/2025

TMA’s 2025 Global Myositis Patient Conference | Dallas, Texas, USA | September 18–21. The MyoCon2025 ends on World Myositis Day. Don't miss!

03/05/2024

This year’s TMA Annual Patient Conference will take place in Baltimore, Maryland on September 6-8, 2024, at the Hilton Baltimore Inner Harbor Hotel. Registration opens in early April. See the link below for a preliminary schedule. TMA will provide more information, including a detailed session schedule, as it become available.

2023 International Annual Patient Conference: Celebrating YOU Our Myositis Heroes I September 7–10 | San Diego, CA

05/18/2023

Abstract. Inclusion body myositis (IBM) is an autoimmune and degenerative disorder of skeletal muscle. The B cell infiltrates in IBM muscle tissue are predomina

05/03/2022

https://strongly.mda.org/simply-stated-inclusion-body-myositis-revisited/

04/18/2022

https://www.healthing.ca/what-it-feels-like/what-it-feels-like-a-positive-outlook-on-a-disease-without-a-treatment

Imagine one day your doctor tells you “ We don’t know what caused it. We don’t have any treatment for it and we sure don’t have any cure for it.” That was Tom Wood’s experience when he was diagnosed with sporadic inclusion body myositis (sIBM), a rare disorder that is estimated to affect...

02/09/2022

https://www.hopkinsmedicine.org/news/articles/musician-peter-frampton-provides-johns-hopkins-with-new-insights-for-treating-inclusion-body-myositis

News and Publications > Articles Musician Peter Frampton provides Johns Hopkins with new insights for treating inclusion body myositis Peter Frampton performs on stage. | Photo by Amy Harris Musician Peter Frampton provides Johns Hopkins with new insights for treating inclusion body myositis By Ja...

02/08/2022

For those interested, TMA's 2022 Annual Patient Conference: A Focus on the Future, is scheduled this year September 8 - 11, 2022, in Orlando, Florida. Conference agenda, online registration (including early registration), and lodging information are available at:

Join The Myositis Association for our 2021 International Annual Patient Conference, “The Power of US!”. TMA invites you to our 3-day completely virtual experience featuring myositis specialists and expert presenters on everything related to myositis and its treatment.

01/22/2021

Join The Myositis Association (TMA) TODAY and each Friday at 12pm est for .

TMA’s 2020 Virtual Annual Patient Conference provided a unique opportunity for myositis patients, care partners, and experts to come together to address topics including myositis research, technological advancements, clinical care best practices, support, resources and the needs of myositis patients worldwide. Join them weekly on Fridays at www.myositis.org for access to their .

Watch today, 12PM Eastern Standard Time, at: https://youtu.be/haXnfRClwMc

For more information, please go to: https://www.myositis.org/blog/join-our-myomatinee/

We work to provide education, research and support to the myositis community. Find resources, learn about treatments and connect with others like you.

01/14/2021

Join The Myositis Association on Wednesday January 27, 2021 at 6PM Eastern Standard Time for a Virtual Meet & Greet with their new Executive Director, Chrissy M. Thornton.

You may access the webinar at: http://bit.ly/tmameetgreet

For more information, please go to: https://www.myositis.org/myositis-library/webinar/

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12/11/2019

With 200 new sign-ups so far in 2019, more people have joined the Inclusion Body Myositis Disease Registry at Yale this year than any other calendar year since the Registry began in late 2016.

To join (or to update your information if your mailing address or email has changed), go to https://publichealth.yale.edu/ibmregistry/getinvolved/ and click on "Join the Registry."

Joining our Registry and providing us with your contact information is free and does not obligate you in any way to participate in any further surveys, if you don’t want to.By joining our Registry, you will be able to: receive periodic newsletters about The Inclusion Body Myositis Disease Registry...

Address

60 College Street, 3rd Floor (HPM), P. O. Box 208034
New Haven, CT
06520

Website

http://ibm.yale.edu/

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About Us

We are a team of researchers and physicians dedicated to helping IBM patients and their families by providing informational and practical tools to better understand the disease, as well as establishing platforms to support clinical and scientific IBM research.

In 2011, Dr. Martin Shubik (left, in the picture above), a retired Yale professor and an IBM patient himself, provided the Yale School of Public Health with the funds to begin collecting data on this rare disease. A project that began in 2012 with a survey to collect and study clinical profiles from IBM patients across North America, the Yale Registry is now the largest systematic categorization of IBM.

In addition to showcasing survey findings, the IBM Registry at Yale (www.ibm.yale.edu) is host to a number of other resources. The most recent addition, and part of an exciting new project, is the IBM Personalized Index Calculator, designed to help people with IBM track the progression of their disease. We hope that the data we collect will help patients and doctors better understand how IBM affects different people over time.

As we continue to grow, our mission remains to help and support all involved with IBM. Please do not hesitate to reach out to us. We invite you to join us in this collective effort to learn more and to hopefully one day find a cure for IBM.