Telefonnische Gesprächsgruppe DM1/DM2

2nd Tuesday of Each Month

7:00 PM - 8:00 PM CEST (Central European Time)
10:00 AM - 11:00 PM PST (PDT)

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Zoom ID: 833 4601 5320
Zoom Passwort: 130826

Stay connected with the Telefon-Kontaktgruppe myotone Dystrophie Facebook Group!

Moderator: Anke Klein & Bernhard Rogg

Telefonisches Treffen für Betroffene DM1/DM2 und/oder deren Angehörige. Teilnahme über Computer, Tablet, Smartphone oder Festnetzanschluss möglich. Für die Teilnahme per Festnetz oder Smartphone werden nationale Rufnummern zu Festnetzanschlüssen mitgeteilt. Kosten entstehen nur dann wenn der Teilnehmer über keine Flatrate verfügt.

Date(s)

Tue, 09/10/2024 - 05:00AM Add to Calendar 2024-09-10 00:00:00 2024-09-10 00:00:00 Telefonnische Gesprächsgruppe DM1/DM2 To know more about this Event, Just go to: https://www.myotonic.org/telefonnische-gespr-chsgruppe-dm1dm2 Location Myotonic Dystrophy Foundation info@myotonic.org America/Vancouver public

Myotonic Dystrophy News

November 20,2024

New Educational Series - Understanding Myotonic Dystrophy

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our first animation “Understanding Myotonic Dystrophy – The Basics” is a broad introduction to myotonic dystrophy to help increase awareness and understanding.

October 18,2024

Research Archive: "Increased Frequency of Repeat Expansion Mutations Across Different Populations"

MDF's Chief Scientific Officer, Dr. Andy Rohrwasser, summarizes a study “Increased frequency of repeat expansion mutations across different populations” published in Nature Medicine in October 2024, an important genetic study examining the presence of repeat expansions including myotonic dystrophy (DM) in over 82,000 individuals. For our myotonic dystrophy community, the study confirms the high prevalence of DM1. The study also highlights the importance of vigilance for healthcare providers suspecting the disease as the repeat expansion might be present with low repeat numbers without any (yet) apparent symptoms.

October 18,2024

The World Glows Green in Celebration of International DM Awareness Day 2024!

In celebration of the 4th Annual International Myotonic Dystrophy Awareness Day, our incredible community members and partners from all around the world dressed for the occasion and lit their local and national monuments in green.

October 18,2024

MDF Announces 2024 Pilot Grant Recipients Selected & Request for 2025 Pilot Grant Applications

After rigorous review, we are excited to share that in September, the MDF Board approved four outstanding projects to receive the MDF Pilot Grants. These research efforts will focus on critical areas for DM, including sleep, dyslipidemia, exercise, and therapeutic delivery. We are also excited to announce the launch of a new round of our Pilot Grants Program this November! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM).

September 15,2024

Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day

On the 15th of September 2024, the Global Alliance for Myotonic Dystrophy Awareness unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that aﬀects thousands of individuals and families worldwide.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.

Telefonnische Gesprächsgruppe DM1/DM2