What Happened During World Rare Disease Day 2016: Part 3

March 16, 2016

Soft Bones: The US Hypophosphatasia Foundation

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Submitted by Denise Goodbar

“This year we introduced our new mascot the ‘HPP HiPPo.’ Patients posted pictures of the hippo on social media. Patients also posted their pics in the Global Genes Frame. We really felt like the activities surrounding WRDD helped to foster a sense of community amongst our members.”


Rare Disease Week on Capitol Hill With The Cystinosis Research Network

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Submitted by Terri Schleuder

We sent 8 people from the Cystinosis community to lobby their states’ legislators about the needs of those with the Rare disease, Cystinosis by sharing their individual stories. They were there from Feb. 29th through March 3rd. Each person met with between 2 and 6 legislators on Wed. March 2nd. They also were able to network with other people from the Rare Disease community sharing experiences and information during the week.


A Mother’s Message

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Submitted by Susan Wilson

A mother of a daughter with Sanfilippo Syndrome wrote, “It was a simple Facebook post both on my personal page as well as the Foundation’s. The day gave me pause to think and reflect on our journey and the progress that has been made over the past 21 years we have known of our daughter’s diagnosis and raised funds toward research.”


Horizon Pharma


Submitted by Geoffrey Curtis

This was our first organized Rare Disease day event and more than 80 percent of our employees participated in our all-employee meeting and social media posting and sharing. At our all-employee meeting we had a Chronic Granulomatous Disease patient speak to employees and educate on the disease. Fundraising goal was $2500 on top of donations we had already provided NORD, EURORDIS, Global Genes, CLIMB and CORD. The numbers are still being tallied.

NephCure Kidney International Rings Bell at Stock Exchange


Submitted by Erin Russell

It was a great success! We had a patient mom write this beautiful piece about what it’s like living with a rare and chronic disease. It spoke to all constituents and got incredible traction. We also uploaded an infographic we had created about the basics of our disease because it can be very confusing. That, too, got amazing traction and took on a life of it’s own. We also rang the closing bell at the stock exchange on March 1.

Making Our Mark on Rare Disease at Sanguine


Submitted by Lindsey Burton

We had a great time celebrating ‪Rare Disease Day‬ at Sanguine! The rare disease community inspires us every day as we work together to advance rare disease research.

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