Who can/should attend PCOS Advocacy Day?
All people with PCOS and their supporters as well as industry and healthcare providers who see women with PCOS are encouraged to join us for PCOS Advocacy Day.
Why attend PCOS Advocacy Day?
The NIH, the largest funding agency of biomedical research in the world, invests over $30B annually with less than 0.1% of that budget going to PCOS research. With declining numbers of investigators entering the field due to lack of research funding opportunities and an increasing prevalence of PCOS, we are at a critical juncture where there is an urgent need to advocate for increased funding for quality PCOS research.
With the many competing federal funding priorities facing Congress, it is critical for the PCOS patient, medical, health care and research communities to communicate to policymakers not only how funding PCOS research positively contributes to the overall health and well-being of the American people, but also how it can ease the economic burden that PCOS and comorbidities place on us and our society.
Members of Congress want to hear from their constituents. The participation of the PCOS patient, healthcare, scientific and research communities in our 2018 Advocacy Day is critical to demonstrating that increased investments in biomedical research and PCOS programs are needed to have a real impact on the people in their home states and throughout the country. We need your voice to amplify our message!
Will I receive any pre-event materials?
Yes. PCOS Challenge volunteers will prepare materials that will include a brief overview of PCOS and issue fact sheets. PCOS Challenge contact information will also be included in the packets as well as any other pertinent materials.
How do I register for PCOS Advocacy Day?
Please register for PCOS Advocacy Day online using our secure site. If you have any questions, or problems registering online, please send us an email using our contact form or call (404) 855-7244.
How much does the event cost?
Registration Fee – $25
Each participant must register individually due to specific information needed per participant.
Requests for refunds will be accepted through April 30th.
My spouse and/or children are planning on accompanying me to Advocacy Day. Do they need to register?
Yes, each person attending PCOS Advocacy Day needs to register individually.
May someone who is not registered for the event accompany me?
Each person attending PCOS Advocacy Day needs to register.
I have multiple addresses. Which one should I use?
Meetings will primarily be scheduled based on the address where you are registered to vote.
I am interested in attending PCOS Advocacy Day, but don't know yet if I can make it. Should I still register?
Space is limited for this very event, so we strongly encourage you to do everything you can to make a decision quickly. We ask that you consider waiting to register until you are sure you can commit to attending. PCOS Challenge will incur a significant cost for those who cancel after February 15, 2018, or who register but do not attend the event.
What’s included with PCOS Advocacy Day registration fee?
As an Advocacy Day participant we will provide you:
- Appointments with the offices of your representatives
- Advance talking points about PCOS Challenge policies and legislative priorities
- Background and preparation materials for meetings
- Networking opportunities
- Advocacy training workshop
- Advocacy training breakfast
- Reception with special invited guests
Will there be food?
On Thursday, March 7th, there will be coffee/tea and breakfast items at 8:00 AM to 10:00 AM and beverages and hors d’oeuvres at the reception (4:00 PM to 5:30 PM). There are cafeterias and coffee shops in most Senate and House office buildings. Food is allowed to be brought in to all Senate and House office buildings, and we encourage you to carry snacks or fruit with you.
When is the registration deadline?
February 28th is the deadline to register. We encourage you to register by February 15th for best results with scheduling a meeting with your legislators’ offices.
Logistics and PCOS Advocacy Day Meetings
How do I get to Capitol Hill?
The Rayburn House Office Building is located on Independence Avenue between First Street SW and South Capitol Street in Washington, DC.
From Capitol South Station:
Take the Blue or Orange line to Capitol South Metro station. After ascending the escalators from the Metro station, turn left on First Street. Take a left at the corner onto C Street. The Rayburn Building is the third office building on your right. Visit Washington Metropolitan Area Transit Authority’s website (www.wmata.com) for rail maps, fares, how to ride and more.
Traveling to Capitol Hill by car is discouraged as parking in the area is extremely limited.
You may also use a taxi or ride service such as Uber or Lyft for transportation.
Do I need to participate in the whole training session on Wednesday, May 16?
Yes, it is highly recommended that you attend the whole Advocacy Day training.
What can I expect?
You can expect to meet with Members of Congress and/or Congressional staff that are relevant to health care policy from your home State’s Congressional delegation (House and Senate).
- You will be provided a schedule on the morning of PCOS Advocacy Day that lists the Members and staff you will be meeting along with leave behind fact sheets for your meetings.
- Before you arrive in DC, you will be provided talking points and issues to raise during the meetings.
- You will have an opportunity to ask questions about the meetings and materials and receive a briefing on lobbying “dos and don’ts” at the Wednesday advocacy training and at breakfast during PCOS Advocacy Day on Thursday.
- You will be placed in a small group with several other PCOS Advocacy Day participants and/or accompanied by a guide from PCOS Challenge, that will know their way around the Hill and take you from meeting to meeting, and will carry handouts from PCOS Challenge to leave behind at offices.
- You will have further opportunities to network and spend time with fellow advocates and PCOS Challenge members throughout the day and during the debrief on Capitol Hill immediately following the day’s meetings.
What meetings am I supposed to set up for PCOS Advocacy Day?
NONE. PCOS Challenge will be arranging ALL Congressional meetings for you – with your one Representative and two Senators. Your appointment times will be provided to you during the training breakfast, along with the names of all those who are attending the same meeting.
Will I be meeting with my actual Representative and Senators?
It is often difficult to get an appointment with your actual Representative and Senators, so PCOS Challenge will make the appointments with the staff relevant to health care policy when needed. Congressional staffers play a key role in determining the direction of legislation and providing information and input to the Member of Congress regarding their area of interest. Congressional staff does the lion’s share of information gathering and takes the majority of meetings with constituents and advocacy groups who have an interest in a particular issue. As Members of Congress rely heavily on their staff for input, meeting with them is an opportunity that should not be missed.
Will I be able to go on congressional visits with my friends or family from other parts of the country?
If you do not have a conflicting meeting, you are free to accompany your friends and family to their scheduled meetings.
What issues are we supposed to talk about?
The most important message to get across in your meetings is for the Member of Congress or staff to understand what PCOS is and how it impacts you and your life as well as others in your district or state and the country. It is also important to let them know the need for more PCOS research and access to proper care.
We will be provide a training session with details about the logistics of the meetings and what to expect before the actual Advocacy Day and will cover the legislative issues on site during the PCOS Advocacy Day training and briefing.
If you have any further questions, please send us an email using our contact form or call (404) 855-7244.
How long should each of my meetings last?
You should expect each of your meetings to last around 15–20 minutes, depending on the availability of staff or the Member of Congress. It will take you approximately 20 – 30 minutes to get back and forth between the Senate side and the House side. Therefore, we will allow 1 hour between your Senate meetings and your House meeting to give you enough time in the event that a meeting starts late, runs longer than expected, or to ensure enough travel time between the House office buildings and the Senate office buildings.
What should I bring?
Materials to take notes and a phone or camera to take pictures.
What should I do after my meetings with Congressional staff?
During times when you do not have any scheduled meetings, we need your help to drop off letters and information to other offices close by.
Will there be handouts available for us to leave behind for Congressional staff?
Yes. PCOS Challenge volunteers will prepare materials that will include a brief overview of PCOS and issue fact sheets. PCOS Challenge contact information will also be included in the packets as well as any other pertinent materials. These materials will also be available on the webpage as they become available.