As a mom with a child with rare disease, I can relate to the needs of other parents and caregivers about raising awareness for their children.  Most of my blog entries are either about my son’s or other children’s rare disease, and my tweets on Twitter are typically about RARE Disease advocacy.

The other day, I met a woman on Twitter who’s son Dustyn had RMD (GA1) (Rare Metabolic Disorder – Glutaric Aciduria Type 1).  I had been following her tweets after accepting an invitation from her. It wasn’t just her tweets that interested me – it was the background of her Twitter profile that caused me to pause.

This mom @RareMetabolic, using three different symbols of hope, unity, and awareness had produced an inspiring photo and placed it on her Twitter profile.

I was immediately enthralled by her ability to combine three of the most important pieces of rare disease awareness together into one symbol.  It wasn’t solely to focus on the disease that affected her and her son’s life, it represented a desire to look toward the future with organizations that are searching for the same outcome: research, disease awareness, collaboration, and support.

Kudos to @RareMetabolic for reminding us about the importance of coming together for rare disease!

P.S.  @RareMetabolic –  The following question was posted by you on another rare disease site.  I was wondering if you knew where I could find a complete list of inborn error of metabolism?   Hopefully, the following information from Mayo Medical Laboratories is helpful to you.

3 thoughts on “Twitter: Coming Together for Rare Disease”

  1. Mele Mo'ale says:

    Hi my name is Mele Mo’ale , I am from New Zealand , My son Tyson Fiata was born on Valentines day 2012..it was through a guthrie test that we had found out my boy had tested positive for a rare metobolic disorder and the 2nd test was to confirm a definite yes that he does have a rare metobolic disorder, as a new mom and then having to find out that my boy is a little special everything was so new to me although i took it all in as soon as i found out thank God for my postive thinking. I am looking for other mothers out there with children with a metobolic disorder or mothers with children or child that have Glutaric Aciduria GA1 it would be good to talk to other mothers out just so i know i am not alone in this rewarding job 🙂

  2. We understand your need for support and hope you will find the following organization of help to you: https://www.oaanews.org/ga-1.htm#. All our best.

    – Global Genes Team

  3. Marion says:

    Hi Mele, I have been researching the internet and found your post. My little grandson has just been diagnosed with GA1. My daughter and family live in Chile, but as it is such a rare desease, maybe you would also be interested in talking to someone from overseas. I know my daughter would be. She does speak good English, in case you wonder. Let me know if you are interested in establishing contact. Thanks Marion

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