On Thursday, January 17th, the Global Genes team was able to host a RARE Meetup™ at our NEW Global Genes office. We were excited to share our new headquarters with local patient advocates and other supporting members of the rare disease community.

Many patient and parent advocates, foundation representatives, genetics specialists, and corporate supporters attended this RARE Meetup™. The discussions were mainly focused on ways everyone can get involved for World Rare Disease Day. We also discussed how many patient and parent advocates were shown little compassion from their local doctors when first learning of the rare disease community.

Thankfully, most have found great and supportive doctors that they can rely on. One patient even shared that her doctor called her over the holiday season to check up on her.

Having representatives from supporting companies in the rare disease community made an incredible difference. Their presence and ability to contribute to conversations encouraged these advocates to continue to work hard at their organizations.

Corporate representatives were able to connect with some of the very clients their treatments affect.  They saw families still searching for viable diagnoses for their children’s rare diseases, and they heard the struggles some patients endure just to get the answers they need.

At the end, those present came away from the event understanding that the public needs to know that rare diseases are not just a minor issue—it is not just a local issue or a national issue either. The entire globe is affected. Rare diseases are everywhere. And the best way to bolster awareness is for each of us to unite and spread the word!

Some of the rare diseases represented at this RARE Meetup™ included Ataxia-telangiectasia (A-T), Chl1gene, Metachromatic Leukodystrophy (MLD), Systemic Mastocytosis and Myelomeningocele (Spina bifida).

Some supporting companies represented at this RARE Meetup™ included Walgreens, Mauli Ola Foundation, Parabase and Orphan Europe.

If you are interested in attending a RARE Meetup™ or starting one in your area, email raremeetups@rareproject.org for more information.

 

Global Genes loves their city! See the many ways that GG has affected the RARE community is Orange County and learn how you can support their efforts on Orange County’s very own day of giving April 21st! Don’t want to wait till the 21st to support GG? Donate Now!