Make Your Voice Heard – Rare Disease Day

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On the last day of February each year, the rare disease community unites to celebrate Rare Disease Day.  In honor of this day, the community joins forces over the course of the last week of February to draw attention to the special needs of those who are dealing with rare diseases like sarcoma.  While we work tirelessly every day to raise awareness, we see Rare Disease Day, and the days that lead up to it, as a wonderful opportunity to further educate the public, legislators, and government regulators about the challenges faced by those with sarcoma.

As part of the week’s events in 2013, the Rare Disease Legislative Advocates (RDLA) hosted a Legislative Conference and Lobby Day.  At the conference, patient advocates learned about the legislative process and were empowered to take an active role in the democratic process.  The advocates then took part in meetings on Capitol Hill as a way of educating legislators about the special needs of the rare disease community. RDLA put together this great video of the 2013 Rare Disease Legislative Conference and Lobby Day, which gives you a glimpse into what it’s like to serve as an advocate on Capitol Hill.

Sarcoma Advocates at the 2013 Rare Disease Day Legislative Conference
Sarcoma Advocates at the 2013 Rare Disease Day Legislative Conference

To bring attention to the needs of sarcoma patients, a group of people from all across the country traveled to Washington, DC, to meet with their members of Congress.  These were folks from all different walks of life who, unfortunately, had one thing in common – their lives had all been touched by sarcoma.  Some had battled, or were still battling, this cancer themselves.  Others had lost loved ones to the disease.  These personal experiences with sarcoma led each one of them to become vocal advocates for all sarcoma patients.  So, in late February of 2013, these advocates made their way to the nation’s capital to stand up for all who have been affected by sarcoma by participating in the Lobby Day.

One of the sarcoma advocates who took part in this year’s events was Bill Suit.  Bill is the Chapter Leader for SFA’s Pennsylvania chapter and serves as Co-Chair of the Pittsburgh Cure Sarcoma Committee.  This is how he described his experience in Washington, DC:

Bill and Sue Suit
Bill and Sue Suit on Capitol Hill

“We discovered that this rare form of cancer, sarcoma, made us part of a larger group, Rare or Orphan Diseases.  Joining together we have a larger and stronger voice.  A unified voice that cannot be ignored.

When talking with the staff on The Hill, I stressed to them that when they talked about rare diseases to remember me.  To put a face with the issue…and mine, now flushed with a rash and swollen due to the side effects of my clinical trial, should be easy to remember.  I now represented a personal attachment or encounter with a rare disease, particularly Leiomyosarcoma.  Hopefully my face and this issue will be ones that they long remember.

How proud I was to have my wife, Sue, with me.  This journey with sarcoma has taken me (us) to many places and to various stops.  Little did I imagine that this journey would take us to Capitol Hill.  I have come to expect numerous trips to the hospital and to the doctors’ offices, but this trip was a great experience and exposed us to many wonderful, passionate and caring people.  Thank you SFA and RDLA!”

It seems amazing that we are already quickly approaching yet another Rare Disease Day.  RDLA is once again taking the lead in developing the fantastic events held during this week and the SFA is proud to be a partner with them in this effort.  We would like to invite you to join us in participating in these events to be held in Washington, DC.

Eileen and Jim Schnapp with Rep. Rob Andrews (D-NJ)
SFA Chapter Leaders Eileen and Jim Schnapp with Rep. Robert Andrews (D-NJ)

The 2014 Rare Disease Legislative Conference will take place on Tuesday, February 25.  The Lobby Day will take place the next day, Wednesday, February 26.  Lobby Day will begin with a training breakfast to prepare advocates for their meetings with their legislators.  Organizers of the event will take care of scheduling the meetings and will provide you with the information that you need to have successful meetings with your Members of Congress and/or their staff.

Please consider making your voice heard by participating in the 2014 Rare Disease Legislative Conference and Lobby Day.  More details and complete registration information can be found at http://rareadvocates.org/save-the-date-rare-disease-day-week-feb-25th-28th/.  Travel scholarships are available.