Feb
22
1:00 PM13:00
Oct
22
4:30 PM16:30
Haystack Project Industry Roundtable
HAYSTACK PROJECT and RCPC invite biopharma to join our discussion…
Whether your company is new to Haystack’s work or already familiar, please come join us. We will present the policy priorities Haystack has been educating policymakers about. As our work gets attention, we have been asked about prioritization, examples, and stakeholder support. So we are beginning a series of stakeholder roundtables and discussions…
RSVP to: Jim Caro | CEO, Haystack Project | jim.caro@haystackproject.org
Jul
16
4:30 PM16:30
Haystack Project Industry Roundtable
HAYSTACK PROJECT and RCPC invite biopharma to join our discussion…
Whether your company is new to Haystack’s work or already familiar, please come join us. We will present the policy priorities Haystack has been educating policymakers about. As our work gets attention, we have been asked about prioritization, examples, and stakeholder support. So we are beginning a series of stakeholder roundtables and discussions…
RSVP to: Jim Caro | CEO, Haystack Project | jim.caro@haystackproject.org
Feb
25
to Feb 26
Haystack Project hosted a Value and Access Panel Discussion during Rare Disease Week
A RARE ACCESS Discussion… As advocates come together during Rare Disease Week, Haystack Project and the Rare Cancer Policy Coalition will host an interactive Panel Discussion on Access and Value in Rare. Cutaneous Lymphoma Foundation will lead the discussion for rare cancers.
Jan
29
to Jan 30
U.S. Senate HELP & Finance Committee Roundtable with Haystack Project
Senators Scott (R-SC) and Casey (D-PA) co-invited Haystack Project patient groups to present their policy priorities to HELP and FINANCE Committee staff. Since both Senators sit on both committees, we had a very robust turnout! Haystack’s patient groups fielded a range of questions and it was a great conversation that has led to ongoing relationships and interest in the priorities presented.
Dec
9
10:30 PM22:30
Congressional Rare Caucus Haystack Project Roundtable
Rare Caucus leaders Reps. Gus Bilrakis (R-FL) and G.K. Butterfield (D-NC) hosted Haystack Project at a Rare Caucus Roundtable, inviting Rare Caucus members’ staff. Four patient organizations active in Haystack Project shared information about their rare conditions and the patients they represent and the Haystack Policy Priorities developed by the groups. The discussion was robust and the follow-up interest even better!
Oct
21
to Oct 22
October 2019 — Haystack Project and RCPC hosts senior Senate staff
October 2019 — Haystack Project and RCPC hosts senior Senate staff, who encouraged members to get involved on behalf of rare and ultra-rare patients!
May
1
2:00 PM14:00
CPAG Meeting of Patient Groups
I was invited to speak at this CPAG meeting of patient groups on the topic of reimbursement. What is it, Why is it relevant to the rare disease community, and what can patients do to address the challenges….
Rare and ultra-rare groups continue to come at this complicated issue from all sorts of perspectives and with varying degrees of understanding. No matter where they start, they have one important thing in common -- ALL OF THEM appreciate very quickly how impactful reimbursement already is or will be to their patient journey! Thanks for the opportunity!
Apr
10
10:00 PM22:00
Haystack Project Dinner and Networking
Every time Haystack Project members come together, we become more strongly tethered - to our mission and to each other! Great evening at World Congress this past week. Until next time!
Feb
27
10:00 PM22:00
Rare Disease Week in DC
Haystack Project members in town for Rare Disease Week - seasoned veterans and brand new members - came together to share experiences, advice and inspiration!
Oct
30
10:00 AM10:00
CDER Rare Diseases 2017 Public Meeting
Saira Sultan, CEO and Founder of Connect4Strategies, will participate in this event.
Oct
16
to Oct 17
By Invite Only: Haystack Project Dinner
Save the Date for Dinner
October 16, 2017
6:30pm arrival/7:15pm seated dinner
By Invitation Only
Robert’s Place Patio
Omni Shoreham
2500 Calvert St NW, Washington, DC 2000
Your host:
Saira Sultan, Connect 4 Strategies
Sep
11
4:30 PM16:30
Mar
2
11:00 AM11:00
Haystack Payer Incentives Meeting
The meeting was moderated by Saira Sultan, Connect 4 Strategies. Attendees included representatives of leading innovators in the ultra-orphan space. A brief introductory discussion framed up the distinction between orphan and ultra orphan from a business perspective and the lack of such a distinction in the current policy landscape, particularly given the increased awareness of “blockbuster orphan” drugs.
Aug
2
4:30 PM16:30