Walking into summer 2020

--Why the urgency? Sometimes you can't understand the depts of someones words without havign walked a similar path. And RIGHT NOW there is a small opportunity for a connection between the concerns, problems, and challenges inlight of CVOID19 are amongst the primary ones that this invisible community combats daily. However, despite the numbers under the rare disease umbrella we are not afforded with the work place accommodations, media coverage, relief programs, and special resources for research that we so desperately need to make change and put an end to the suffering.

Above all else we lack the community and voice to express the struggles that occur in our lives due to stigma, lack of knowledge and at time yes, ignorance. Show up. STAND UP. and SPEAK UP, not just for CVOID19 but for those who were suffering alone before right in front of you.

--So What Can you do? Start the conversation with anyone. Share this post to help others become aware, we are all stuck for a while so at least it will give some new content?

And Lastly, accept this RARE. "social distancing" Challenge

1.) Grab your Weekend Social Distance 50/50 and take a gamble on a better tomorrow.

1 for 7$

2 for 11$

5 for 13$

10 for 22$

2.) SHARE. SHARE. SHARE. an extra ticket will be given to each participant who tags @findyourrare // #findyourrare on any social media platform

3.) Tune in LIVE on facebook/youtube 7 PM EST. Sunday as we announce the winner who will recieve 50% of the total amount instantly via their desired virtual banking. *

We can't keep fighting this battle alone and we are thinking you could use a break from the day in and day in kinda situation. So Join the Movement. Spread the Word. Take a Risk and Change how invisible struggles are seen.

imagine if every minute of everyday people didn’t believe you; family, friends, work and even your doctors become deaf to your words because of how little they take your account seriously

Think about the turn your life would take..