19Sep

The Launch of MISSION: HIDE AND HELP

We are more than excited to launch our new campaign Mission: Hide and Help This is a grassroots social experiment meant to help diagnose Sanfilippo Syndrome.  Aimed at doctors and executed by kids, we are mixing our love of Pokemon with the urgency to find more patients.  “Nobody can find rare like you can”. Read full press […]

11Apr

MPS awareness day is coming, here is an update to cheer us all up.

Biomarin is full speed ahead with their clinical trial. If you haven’t updated your surveys on our patient registries, now is a good time to do so. Help BioMarin help us. https://connect.patientcrossroads.org/?org=ConnectMPS If you haven’t registered your MPS, ML or Glycoprotein family members, this would be a great way to celebrate MPS awareness day. Sometimes […]

08Mar

Jill Wood, Rare Disease Congressional Caucus Briefing

  Jill was asked to speak at the Rare Disease Congressional Caucus briefing this past week when we were in Washington, D.C. for Rare Disease Week. Although Jill addressed the caucus 2 years ago, she was still a bit hesitant to accept.  When she found out she was to speak on “The Role of Incentives […]

28Nov

Anonymous Donor to Make a $20,000 Donation!

Tomorrow is Our Chance I KNOW! We are excited too.  If we can raise $10,000 tomorrow, #GivingTuesday, we will get a DOUBLE MATCHING donation of $20,000.  On top of that, the charity that raises the most will get a $25,000 donation from Crowdrise.   Please give what you can tomorrow, and urge your friends, family, co-workers, mailman, […]

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