General Information
Who can/should attend PCOS Advocacy Day?
All people with PCOS and their supporters as well as investigators, industry professionals and healthcare providers who see people 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 $43B 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.
What should I wear?
If you have video conference meetings (as opposed to phone conference meetings) scheduled with legislators and staff, business casual or smart casual dress with something teal (the color of PCOS awareness) is recommended.
How can I volunteer to help with PCOS Advocacy Day?
To sign up to volunteer for PCOS Advocacy Day, please fill out our volunteer form.
We have the following volunteer opportunities available.
- Planning Committee – Assist with PCOS Advocacy Day planning, scheduling and coordination.
- Regional Leader – Assist with coordination and training of state captains and assist first time advocates in their meetings.
- State Captain – Help train PCOS Advocacy Day participants and assist first time advocates in their meetings.
- Technology Testing – Help test the PCOS Advocacy Day communications, scheduling, and conferencing systems. (No experience required)
- Outreach – Assist with outreach to healthcare providers and online promotions
- General Volunteer – Assist with various PCOS Advocacy Day related tasks as needed.
Registration
How do I register for PCOS Advocacy Day?
Please register for PCOS Advocacy Day online using our secure registration page. 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 Monday, February 14th.
My spouse and/or children are planning on join me for Virtual PCOS 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 participate in my meetings with members of Congress and staff?
Each person attending the PCOS Advocacy Day meetings must register separately. PCOS Challenge must let the Congressional offices know who will be participating in our scheduled meetings.
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?
Meetings with members of Congress and staff take a significant amount of time to coordinate, 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. There is a heavy administrative and logistics burden for PCOS Challenge if participants cancel within a week of the event or register, but fail to attend meetings.
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
- Access to PCOS Advocacy Day events with special invited guests
Registration fees also help PCOS Challenge cover PCOS Advocacy Day video and phone conferencing costs and other significant event expenses.
When is the registration deadline?
Sunday, February 20th is the deadline to register. We encourage you to register by Friday, February 11th for the best results in scheduling meetings with your legislators’ offices.
Logistics and PCOS Advocacy Day Meetings
How will the virtual meetings being conducted?
Virtual meetings with members of Congress and staff will be held via a web and phone conferencing system such as Zoom or Microsoft Teams.
Do I need to participate in the training sessions on Sunday, February 20th and Tuesday, February 22nd?
Yes, it is highly recommended that you attend at least one of the two PCOS Advocacy Day training sessions happening on Sunday, February 20th and Tuesday, February 22nd from 2:00-5:00pm EST.
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).
- One-to-three days prior to PCOS Advocacy Day, you will be provided with a fact sheet for your meetings and your personalized schedule that lists the Congressional members and/or staff with whom you will be meeting.
- Prior to PCOS Advocacy Day, you will also be provided talking points and issues to raise during your meetings.
- At the Sunday, February 20th and Tuesday, February 22nd advocacy trainings as well as during the PCOS Advocacy Day morning briefing on March 3rd, you will have an opportunity to ask questions about your meetings and materials and receive a briefing on lobbying “dos and don’ts.”
- For PCOS Advocacy Day, you will be placed in a small group with several other advocates and accompanied by a PCOS Challenge designated guide with legislative advocacy experience.
- You will have further opportunities to network and spend time with fellow advocates and PCOS Challenge members during the debrief 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 1-3 days prior to PCOS Advocacy Day, 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.
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.
Prior to PCOS Advocacy Day, we will hold training sessions with details about the logistics of the meetings, the legislative issues, and what to expect. We will also recap the legislative issues during the PCOS Advocacy Day morning 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. We will allow at least 30 minutes between your meetings to give you enough time in the event that a meeting starts late or runs longer than expected.
What should I prepare?
We suggest that you have materials to take notes as well as the speaking points provided by PCOS Challenge or the PCOS Advocacy Day one-sheet handy.
Will there be handouts available for us to share with 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.
What should I do after my meetings with Congressional staff?
After you meetings, you should:
- Fill out the PCOS Advocacy Day Online Debrief Form for PCOS Challenge. Only one person needs to complete this form per meeting.
- Email the staffers you met with thanking them for their time and recapping the PCOS Advocacy Day “asks.”