Rare Disease Day
Rare Disease Day is a global awareness day that takes place on the last day of February every year. This year, Rare Disease Day was on the “rare” date of February 29th, 2016.
The fibrous dysplasia/McCune-Albright syndrome (FD/MAS) community raised awareness across North America. Raising awareness of FD/MAS and the issues faced by people living with FD/MAS is important because it can lead to better public policy, faster diagnosis, and more understanding from communities across the globe. We couldn’t cover everything here, but here are some highlights!
Awareness Raising in Washington, DC
Deanna Portero, Executive Director of the Fibrous Dysplasia Foundation, raised awareness in Washington, DC. Deanna met with 7 Democratic and Republican congressional offices including Senator Jeff Merkley, Senator Ron Wyden, Senator Charles Schumer, Senator Bill Cassidy, Representative Raul Grijalva, Representative Grace Meng, and Delegate Eleanor Holmes-Norton.
In addition to explaining FD/MAS, the lack of treatment options, and other difficulties, Deanna carried the voices and stories of individual families to their representatives in Congress, including:
- A video from a family in Baton Rouge, Louisiana, thanking Senator Cassidy:
- A note from a family in Portland to the staff of Senators Merkley and Wyden: “We appreciate your past support of FD/MAS research at the NIH in 2010 along with then Senator John Kerry and many others and ask that you continue to support the important work that Dr. Collins and his colleagues are doing to better understand and ultimately cure this disfiguring and disabling disease.”
- A letter from New Yorker Lauren Ruotolo in support of the OPEN ACT: “My name is Lauren Ruotolo and I have McCune-Albright Syndrome…As a patient who has lived with the this disease from the time I was 9-months old, I want say that the OPEN ACT is one of the most important legislative acts for people like me as it will provide incentives for clinical trials that are urgently needed, and I hope YOU will stand up for constituents by co-sponsoring the OPEN ACT.” The OPEN ACT is a bill that will encourage drug developers to hold clinical trials for drugs that might be effective in treating FD/MAS or cherubism.
- And more!
Rare Disease Day is a great opportunity to educate lawmakers on the issues faced by our community, and the public policy solutions that can improve the lives of people with FD/MAS, cherubism and related rare bone diseases.
Awareness Raising in Indiana
There were two great events in Indiana! In an unplanned coincidence, both of these events focused on raising awareness among physicians!
Brittany Anderson put together a series of poster boards, and tabled at a medical center in Indianapolis, IN.
A Fibrous Dysplasia Foundation board member also helped organized an event at the Parkview Medical Center in Fort Wayne, Indiana. Dr. Michael Mirro is a member of the FD/MAS Patient Registry working group, and the namesake of the Mirro Center for Research and Innovation. Dr. Mirro gave a presentation to a full room of clinicians about important Fibrous Dysplasia Foundation sponsored research, and helped outline ways that audience members could support an important new law in Indiana.
Dr. Mirro highlights Fibrous Dysplasia Foundation sponsored research projects to the clinical community.
Dr. Mirro raises awareness of an advocacy opportunity for all community members. Requiring step therapy is not smart medicine!
Awareness Raising in Tennessee
Awareness raising is always in full swing in Tennessee! On Rare Disease Day, social media whizzes Lauren Foster and Skye Miu Steppe continued to raise awareness in their local and digital communities.
Lauren and Skye also started February’s #BattleScarChallenge, where FD Warriors across the globe shared pictures of surgical scars.
Awareness Raising Outside the Continental 48
From her current home-base on the Big Island of Hawaii, Fibrous Dysplasia Board member Lisa Heral recognized Rare Disease Day from the southern-most point in the entire United States.
The Pederson’s, the family that raises funds and awareness through Rylan’s Rhythms, raised awareness in Alberta, Canada.
Rare Disease Day 2016 was a great success. Due to the work of the people you just read about, tens-of-thousands of people across the globe learned more about FD/MAS. The Fibrous Dysplasia Foundation’s Rare Disease Day Facebook post alone reached over 17,000 people!
Looking ahead, we need you to get involved in Rare Disease Day 2017. Send us your ideas for Rare Disease Day 2017, and look out for alerts from the Fibrous Dysplasia Foundation on easy, high-impact opportunities to get started.
We need to increase the amount of Rare Disease Day activities we hold as a community–we must grow the educational efforts targeting public policy decision makers, clinicians, and our local communities. We also need to take the next step by converting Rare Disease Day energy into concrete gains. Families affected by FD/MAS and related diseases need real legislative improvements, more research to find better treatments, and more physicians who know how to diagnose and treat FD/MAS. Together, we can do that, and more.