Rare Disease Day Roundup 2022

Published: 28 February 2022

This past February 28th marked  Rare Disease Day (RDD) 2022, the globally-coordinated movement on rare diseases, which works towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease; the NMD4C would like to take this opportunity to share some of the campaigns and events hosted by members of the neuromuscular community for this year’s event.


 

Muscular Dystrophy Canada

To celebrate RDD MDC hosted an “Individually  Rare, Collectively Common” campaign, spotlighting Canadians affected by different neuromuscular disorders (NMDs) and asking them the question: ‘what do you wish you knew when you were first diagnosed and how have you advocated for yourself along the way?’ Read the responses from Canadians affected by NMDs in this article on MDC’s website!

 

Defeat Duchenne Canada

Defeat Duchenne Canada (formerly Jesse’s Journey) asked for the help of the Duchenne community in raising awareness of Duchenne muscular dystrophy on Rare Disease Day, through their social media campaign. You can see how they raised awareness online by:

  1. Following @defeatduchenne on Facebook, Twitter, Instagram, and LinkedIn
  2. View and share their posts from Monday, February 28th, as Duchenne ambassadors speak to what it’s like living with a rare disease.

 

ProDGNE

To raise awareness for GNE myopathy, the ProDGNE consortium shared a week-long #GNEMfacts campaign in the lead-up to RDD to raise awareness of this ultra rare disease. Curated by communications lead and Patient Representative at Gli Equilibristi HIBM Michela Onali, the campaign shares facts describing the clinical aspects of GNE myopathy, challenges in diagnosis and care, and GNE myopathy research. 

 

Check out the video below to learn more about the ProDGNE consortium, which aims to advance the steps for impactful research in GNE Myopathy by expanding the GNE Myopathy research network and building a long term partnership where patients are central partners and key drivers in Research and Development. You can also visit ProDGNE’s website to learn more. 


 

Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation (MDF) is celebrating RDD by continuing their advocacy for people affected Myotonic dystrophy (DM1) to have equal social opportunity, non-discrimination in education and work, and equitable access to health, social care, diagnosis and treatment. MDF have shared a web page where you can access tools to empower advocacy for DM1, learn about possible clinical trials, join the Myotonic Dystrophy Family Registry, and Dm1 guidelines and publications.

This past year MDF recognized the inaugural International  Myotonic Dystrophy Awareness Day on September 15th, in partnership with the members of the global alliance including the NMD4C and MDC. Learn more about MDF’s plans for this year’s event here.

 

 

Facioscapulohumeral muscular dystrophy (FSHD) Society

The FSHD Society have prepared a web page with helpful resources  to join the chorus of FHSD community members telling their story on RDD and beyond, including ways to connect online, joining events, and staying informed by signing up for email updates and following the FSHD blog!

 

Charcot-Marie-Tooth Association

The Charcot-Marie-Tooth (CMT) Association launched a #ImNotGoingToApologizeFor campaign on social media to celebrate RDD. See the campaign below, and learn about how people affected by CMT overcome challenges associated with the disease.

Rare Disease Day logo

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