We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Washington, DC
Based in United States
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Grateful for the esteemed panelists who made our first Scientific Workshop a success! Your insights on changes to rare disease studies at the FDA were invaluable. Special thanks to Dr. Janet Woodcock for leading the effort!
Want to learn more or support Haystack Project? DM us!
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CEO of Haystack Project, Kara Berasi, provides public comment at the Advancing Rare Disease Therapies Through an FDA Rare Disease Innovation Hub haystackproject.org/heart-ac…
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Kara Berasi, HP’s CEO, will be attending the World Orphan Drug Conference, and participating on a panel on April 25th from 3:55-4:35 PM called “How Policy Moves Forward with Patients at The Center”
If you're attending this, please contact Kara to meet up or attend the panel!
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Excited for Rare Disease Day! The Protect Rare Act (HR 6094) is on the agenda at the Health Subcommittee meeting!! Help us celebrate by asking your Representative to cosponsor the bill here: forms.gle/ax66HPXbpE9Jym8JA
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. @RepShriThanedar Happy Rare Disease Day #Michigan #13th Please thank Rep Thanedar for Cosponsoring Protect Rare HR6094. This bill will provide much-needed guidance to #Medicaid and #Medicare to cover off-label treatments prescribed by our doctors for #RareDiseases
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@RepMMM Happy Rare Disease Day! Thank Rep Miller Meeks for taking time and thought on this day to Cosponsor Protect Rare HR 6094. This bill will provide much-needed guidance to Medicaid and Medicare to cover off-label treatments prescribed by our doctors for #RareDiseases
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Are you a Rare Disease Patient, Caregiver, Family Member, or Friend? Take a Minute to Click on This! forms.gle/MwruXvWRiiN3SFiJ9
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Head of Medicare Policy at Kaiser takes time to talk all things IRA with Haystack Project members. Thank you, Juliette!
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Another successful monthly member call. Haystack Project, thanks all patient groups who were able to join and participate.
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Haystack Project thanks Steve Usdin for discussing IRA – Consequences and Opportunities at yesterday's AEI Speaker Series!
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Thank you to all the patient groups who joined our last member call! Haystack Project appreciates all your participation.
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Haystack Project thanks Courtney Johnson for being our speaker this past Tuesday where she discussed all we can expect for Congress this year.
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Thank you to all our patient groups who joined Haystack Project's February member call. We will be sending a Google Form to help us calendar an CED and CMMI work group as a follow up from the call.
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Chevese Turner will serve as Acting CEO while Haystack undertakes a search for a more permanent candidate. She is steeped in Haystack’s mission given her role on the Board, and she brings over 20 years in non-profit leadership to the role.
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Dec. 8/4pm ET Inviting Rare Disease Patient Groups to Haystack Project's Last 2022 2nd Thursday Speaker Series
us06web.zoom.us/webinar/regi…
Dec. 8/4pm ET Inviting Rare Disease Patient Groups to hear Tim discuss:How much lobbying a nonprofit can do? What constitutes ‘lobbying’ and what ‘education’ is? Come learn how to be strong advocates in compliance with the lobbying rules for non profits. us06web.zoom.us/webinar/regi…
We extend our sincere appreciation for your engagement and support. We are grateful to be a part of the rare and ultra-rare community. We look forward to another year of connecting, inspiring, and advocating for the rare disease community in 2022.
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Haystack Project submitted comments to the Social Determinants of Health Caucus. Read there here: static1.squarespace.com/stat…
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Thank you to @DorisMatsui, @RepThompson, @MikeKellyPA and @RepMullin for introducing the Access to Rare Indications Act. Patients with #rarediseases deserve access to evidence-based therapies. #raredeservescare
static1.squarespace.com/stat…
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Haystack strives to educate and amplify the rare and ultra-rare patient and caregiver voice to insurance companies/payers. Your gift helps Haystack Project maintain diversity in our funding. Please consider supporting our work. #GivingTuesday2021!
haystackproject.org/donate
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Haystack strives to educate and amplify the rare and ultra-rare patient and caregiver voice to all payers. It’s not enough to finally develop a lifesaving treatment if Medicare, Medicaid, Exchanges and employers won’t pay for them! Join with us on #GivingTuesday2021!
ALT Haystack Project's Giving Tuesday logo; needle through the "G". Donate at https://haystackproject.org/donate
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After a weekend busy with eating, visiting, and shopping....
Tuesday is dedicated to Giving
#GivingTuesday
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It’s Rare Cancer Day! A day to call out Haystack Project’s Rare Cancer Policy Coalition and its work on behalf of rare cancer patients. Access to rare cancer therapies can’t be taken for granted. We recognize all of the patients and loved ones for whom access to care is crucial.
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Thank you, Rick Chapman, for a wonderful easy way to see how conventional frameworks are lacking. Haystack Project focuses on how rare cancers and ultra-rare conditions impact IVI’s six inputs!
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Haystack Project is proud to join @Aging_Research and 130 groups in sending Congress a strong message about improving access. The more rare the condition, the more expensive the treatment and the higher the copay. WE MUST CAP OOP COSTS! @Haystack_Project #ultrarare
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This quote from the linked article caught Haystack’s attention! This balance is - and will continue to be - critical to all ultra-rare diseases we represent
Link to article: statnews.com/pharmalot/2021/…
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Five Haystack groups cautioned MACPAC policy to extract add’l rebates from accelerated approval treatments is shortsighted as it fails to recognize excessive penalty on desperately needed innovation in ultra-rare.
Learn more about increasing health equity for rare disease patients here: haystackproject.org/health-e…
#healthequity #raredisease #haystackproject
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5 Minutes to Spare? Use it for Rare! Ask your friends or relatives to click here to ask their Congressman to Support the HEART Act (H.R. 1184) #raredisease haystackproject.org/act-now
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Don’t limit access to cancer drugs for MA Medicaid cancer patients @CMSGov. Please don’t approve restrictions in wavier #keepRXaccess
