Twitter: Coming Together for Rare Disease

GGP, WRRD, and RMDA - Together

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.

Dustyn and RMDA type

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. IEM