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monthly 0.5 2017-08-13 https://haystackproject.org/statistics/2017/8/13/approximately-half-of-identified-rare-diseases-do-not-have-a-disease-specific-advocacy-network-or-organization-supporting-research-and-development monthly 0.5 2017-08-13 https://haystackproject.org/statistics/2017/8/13/of-the-approximately-7000-rare-diseases-identified-to-date-95-have-no-fda-approved-treatment-option monthly 0.5 2017-08-13 https://haystackproject.org/events daily 0.75 2022-02-25 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502668963665-V1GL0HONHDN3RS57F9XT/Large-Meeting-Conference.png Events https://haystackproject.org/events/2022/2/22/rare-disease-week-panel-discussion monthly 0.5 2022-02-25 https://haystackproject.org/events/2020/10/22/haystack-project-industry-roundtable monthly 0.5 2020-10-30 https://haystackproject.org/events/2020/7/16/haystack-project-industry-roundtable monthly 0.5 2020-07-14 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https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771945778-X2S8FLXWKZRRUI06C3M9/Blue-Banner.png Other Issues https://haystackproject.org/contact daily 0.75 2020-03-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503629662912-4J0OE73EGEDUCUQ8IYTD/Blue-Banner.png Contact Us https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584141195919-Z82SKM6GLKEDWJ9Z1CL2/7.png Contact Us https://haystackproject.org/join daily 0.75 2025-04-23 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502666012966-ULN4G0A6LETHG8JJB7I8/Dad-and-Daughter-Holding-Hands.png Join https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1804453b-9371-48f9-b282-da19d50a70ee/pexels-thirdman-5256816.jpg Join - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1637263705744-ZI69XGNA9NK73PLTJHSC/Capture.JPG Join - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584141024066-G62FRJTF5QGJY2CWVJAS/4.png Join https://haystackproject.org/resources daily 0.75 2017-08-07 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502668948209-L436KIM3NKLDNJR76WU7/Healthcare-Meeting.png Position Statements https://haystackproject.org/home daily 1.0 2026-03-19 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1737663174931-NLYW6JHO04KPBZVZG8FE/Screenshot+2025-01-23+at+3.11.50%E2%80%AFPM.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/363b83b7-874c-4cd6-a0b6-806e94e7f061/Screenshot+2025-12-19+at+9.30.05%E2%80%AFAM.png The Voices of Rare and Ultra Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/7f99de66-87eb-4b13-b2ab-e38f17ed7e71/Screenshot+2025-07-22+at+2.02.42%E2%80%AFPM.png The Voices of Rare and Ultra Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/9f7a2854-d316-42bb-9ac8-800dcc696f1b/Screenshot+2024-11-08+at+2.02.18%E2%80%AFPM.png The Voices of Rare and Ultra Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/178b33eb-edd5-427c-ab9b-d34a92aa8138/Screenshot+2023-08-14+at+4.30.32+PM.png The Voices of Rare and Ultra Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/adf89b5f-e715-474a-90ed-d457d511f8a8/HEART+Act+Image.jpg The Voices of Rare and Ultra Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502669684974-KX2OL7U4ZCO2G6RE9ZJS/image-asset.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502669770353-KUR61MBP5WXNC29UOFB1/image-asset.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502669810596-045BMN20A4UF0YRMC4PX/image-asset.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503774243982-49QE68FYTN5P5QKB0N5I/Nurse-and-baby-marquee.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502670118207-863X6VUGTHE9W4WV00XW/stock-photo-mother-father-and-daughter-having-fun-in-the-living-room-feeling-happy-and-complete-preview.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503628996161-CDJ1YHIJDTLJCSG2NN8A/image-asset.png The Voices of Rare and Ultra Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584140628140-GC3FLBX1DT0BYFMHUSBI/1.png The Voices of Rare and Ultra Rare https://haystackproject.org/patient-assistance-programs daily 0.75 2020-03-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503881790407-LXSU19DSKOK9S7LOGOGE/Blue-Banner.png Patient Assistance https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584142127061-22ZTRWVXHP0BZJZFA6JY/image-asset.png Patient Assistance https://haystackproject.org/section-340b daily 0.75 2023-08-04 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503631459691-5XOQ2BC58957WRURZ3C2/Blue-Banner.png Section 340b https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771638077-ASDR4JHBJDB7BZPAK2NL/340b+Graphic.png Section 340b https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584141849084-1YQ6OEPKKYUZP8H5DHHR/image-asset.png Section 340b https://haystackproject.org/our-history daily 0.75 2017-08-22 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503366387766-ZQIJGC0AENZSUC53YJ0W/Needle-in-a-Haystack.png Our History https://haystackproject.org/patient-stories-1 daily 0.75 2023-08-09 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503630628573-6O7RM4RQ5UC93UNSIMV6/Nurse-and-baby-marquee.png Patient Stories https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584140796821-WMHLUFUSABH2BBXBCJ9M/2.png Patient Stories https://haystackproject.org/issues-1 daily 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https://haystackproject.org/payment daily 0.75 2017-09-14 https://haystackproject.org/resources-2 daily 0.75 2021-12-07 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1504750487131-VZRZT1ING9I54F5IY8UX/Blue-Banner.png Resources https://haystackproject.org/reports daily 0.75 2017-08-07 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502668707013-RLQKLX0QQ393II1J1RTP/Businesspeople-walking.png Reports https://haystackproject.org/letters daily 0.75 2020-03-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502668508962-J9EWZE396O65DOWA8JC5/keyboard-black-notebook-input.png Letters https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584141638801-TLLX53ZIOIM4TXYHV2TD/10.png Letters https://haystackproject.org/pharmacy daily 0.75 2017-08-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1502665386912-8WGLWQKE82FSSQZE1POB/Image-of-Pills.png Pharmacy 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Zoom https://haystackproject.org/health-equity daily 0.75 2025-09-03 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1508554277189-4DQHNLAND48BEWP13ETF/Blue-Banner.png Health Equity in Access to Treatment https://haystackproject.org/medicare daily 0.75 2024-02-02 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1508554277189-4DQHNLAND48BEWP13ETF/Blue-Banner.png Medicare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584142175403-F9TUW9HU7V5VZM7QDD1E/image-asset.png Medicare https://haystackproject.org/pcori-webinar daily 0.75 2021-02-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613253762041-XJIUVKAH7VV69K7SZDZN/Blue-Banner.png PCORI Webinar https://haystackproject.org/payer-engagement daily 0.75 2025-09-03 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613254166830-FLXPAPTKXA8QLYF6GFR3/Blue-Banner.png Payer Engagement https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/473bedb2-0db7-4f4f-b0cd-5691d2e18a06/Screenshot+2025-09-02+at+4.37.01%E2%80%AFPM.png Payer Engagement - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/9454c120-6998-406a-bc9f-e9f733be8e7a/Screenshot+2025-09-02+at+4.24.48%E2%80%AFPM.png Payer Engagement - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613854942937-YOUFTQQ4PLWT52IZCDCT/achp+logo.png Payer Engagement https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1615045751834-NTYB74J7D16RC9GEYIH7/AMCP+Logo+New.png Payer Engagement https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613854942921-FLHLRRUNYXC10R2H88GO/namd+logo.png Payer Engagement https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1621442771091-WH7GDSG8F1K2HNSVYREX/National%2Balliance%2Bof%2Bhealthcare%2Bpurchasers.jpg Payer Engagement https://haystackproject.org/pcori-grants daily 0.75 2021-02-13 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613253865151-4BGHBPXJ9DXA2YJWTQ8B/Blue-Banner.png PCORI Grants https://haystackproject.org/cms-webinar daily 0.75 2021-03-19 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613253762041-XJIUVKAH7VV69K7SZDZN/Blue-Banner.png CMS Webinar https://haystackproject.org/protectrare daily 0.75 2024-04-08 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png PROTECT Rare Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/822acb29-767e-487a-97f8-75d795f43c01/pexels-karolina-grabowska-4021779.jpg PROTECT Rare Act - Everything you need to advocate for the PROTECT Rare Act! Please find below everything you need to advocate for the Providing Realistic Opportunity to Equal and Comparable Treatment “PROTECT Rare Act”, a bipartisan bill that levels the playing field for rare disease patients trying to access medically necessary care. https://haystackproject.org/heart-actcopy1 daily 0.75 2024-04-05 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png HEART Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/b5ddce03-488a-4be7-b403-c5f28e285df3/Screenshot+2023-11-27+at+10.44.15%E2%80%AFAM.png HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/6f4b3a28-ecc8-4ec9-aad4-3192e418190c/Screenshot+2022-12-29+at+2.19.09+PM.png HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/6fad73e8-7fff-40f7-b267-bd3d45bf3875/pexels-brotin-biswas-518543.jpg HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121787095-CE2XIQULR75VS29G9I7H/HEART+Act+Page+1.png HEART Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121852947-ZUNUSX8FG9C3RQVW6VUY/HEART+Act+Page+2.png HEART Act https://haystackproject.org/donate daily 0.75 2024-10-04 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1637627375009-TICE3F07TL6M51NJKBZ2/Blue-Banner.png Donate https://haystackproject.org/take-action daily 0.75 2024-04-05 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1642540014480-0IIZESC6QGANPLLBHLC4/Blue-Banner.jpg Take Action https://haystackproject.org/about-us-new daily 0.75 2025-11-24 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503629826646-I1OKNJIEPHYVYSDMKLJ6/Elderly-couple-with-grandkids-marquee.png About Us https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584141133240-10TQRK07LMX9ZM6IREKJ/image-asset.png About Us https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/ff5dd49d-3631-47fd-b206-bc520b59c78e/Screenshot+2024-03-04+at+11.49.39%E2%80%AFAM.png About Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/ae27aad6-b5b9-4c3d-9d3a-3f3d4baa4721/Screenshot+2022-12-27+at+2.51.52+PM.png About Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/eb74deeb-a33f-4a23-b45d-d5d0a3088d10/2021+YIR.jpg About Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613234778092-DLPA1CFEHOWBRBBJKEWE/2020-Year-in-Review.png About Us https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1604025485122-KY8FC6QQJI6UCJPQS8H0/2019-Year-in-Review.png About Us https://haystackproject.org/partners-new daily 0.75 2025-02-18 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584139279628-M22C2QXFHZ8R4ZSW1EK6/Blue-Banner.png Partners https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1739898081742-KJQO6P5SJPX61VALMKLM/Screenshot+2025-02-18+at+11.59.19%E2%80%AFAM.png Partners https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1645294605441-6PTCA63YBVR3TX350EAZ/applied+therapeutics.jpg Partners https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1739898081625-ZN01JN049Q6VT503GXTN/Screenshot+2025-02-18+at+11.59.26%E2%80%AFAM.png Partners 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https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1602597977962-SQS4QBDKDKAPGQ1YHEQH/VHL.png Rare Cancer https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1618786592783-PXLXIYG89FHEKE8UQQI7/Young%2BSurvival%2BCoalition.jpg Rare Cancer https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584140916456-WS2WGIVP6G0VTMAGA8E3/3.png Rare Cancer https://haystackproject.org/legislative-priorities daily 0.75 2025-01-24 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png Priorities https://haystackproject.org/advocacy-empowerment-institute-2021 daily 0.75 2022-12-24 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771945778-X2S8FLXWKZRRUI06C3M9/Blue-Banner.png 2021 AEI Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613327075503-SUA2MYBC85GBKBZY3JCA/AEI+Logo_alt+font.png 2021 AEI Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/2aedbf74-6334-4a8d-b2ee-24ec7e84cdfe/JohnCoster.jpg 2021 AEI Speaker Series - John Coster Director, Division of Pharmacy, Center for Medicaid, CMS Click the play button to view John’s most recent webinar with us! https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/0d436e27-279f-4e41-9cfa-3c03a6f16627/christinamccauley.jpg 2021 AEI Speaker Series - Christina McCauley Senior Policy Advisor, Representative Matsui Click the play button to view Christina’s most recent webinar with us! https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613233077969-C1FPRJBCN8AMN93O32X1/Carly+Khan.jpg 2021 AEI Speaker Series - Carly Paterson Khan PhD RN MPH Program Officer at Patient-Centered Outcomes Research Institute (PCORI) Listen to the webinar recording and learn more about PCORI grants https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613233246390-JJ0KGISM2XEMQK157RHP/Matt%252BSalo.jpg 2021 AEI Speaker Series - Matt Salo Executive Director at NATIONAL ASSOCIATION OF MEDICAID DIRECTORS Click here for Discussion Summary https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1628615136839-EBZL6ZVIIGN8MM55PJ57/Ann+L+Schwartz%2C+PhD.jpg 2021 AEI Speaker Series - Anne L Schwartz, PhD Anne L. Schwartz, PhD Executive Director of MACPAC https://haystackproject.org/advocacy-empowerment-institute-2022 daily 0.75 2023-01-04 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771945778-X2S8FLXWKZRRUI06C3M9/Blue-Banner.png 2022 AEI Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613327075503-SUA2MYBC85GBKBZY3JCA/AEI+Logo_alt+font.png 2022 AEI Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/5fb27311-70a4-431a-99f7-7583cb95a89b/SarahShapiro.jpg 2022 AEI Speaker Series - Sarah Shapiro Legislative Director, Representative Swalwell https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/bed72e93-589c-4421-94f5-a2eb64a99080/Hemi.jpg 2022 AEI Speaker Series - Hemi Tewarson, J.D., M.P.H. Executive Director, National Academy for State Health Policy (NASHP) https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/684ca623-844e-4bf6-9268-5416ad5a4fca/Beth+Roberts.jpg 2022 AEI Speaker Series - Beth Roberts Health Partner, Hogan Lovells https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/5b61c869-260f-443b-a97b-4db1ef7efcd4/Sana.jpg 2022 AEI Speaker Series - Sana Raoof, MD, PhD Radiation Oncologist, Memorial Sloan Kettering Cancer Center LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/6b9b3ae9-6fd7-4a00-92e7-f76d0e109db1/Anna.jpg 2022 AEI Speaker Series - Anna Howard Principal, Policy Development, Access to and Quality of Care at American Cancer Society Cancer Action Network. LinkedIn Profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/f1154806-485a-4f57-bf78-aaaf7775d0f6/Joni+L.+Rutter.jpg 2022 AEI Speaker Series - Joni Sutter, Ph. D. LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/015deb1b-f36f-4664-a383-2ffba84f2977/Eric+Sid%2C+M.D.%2C+M.H.A..jpg 2022 AEI Speaker Series - Eric Sid, M.D., M.H.A. LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/13ad107f-1691-4f97-93ac-8320755781bc/Lewis-Fermaglich.jpg 2022 AEI Speaker Series - Lewis Fermaglich, M.D., M.H.A Office of Orphan Products Development, Food and Drug Administration LinkedIn Profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/79bf99f1-0021-4af2-9886-ac380258f89d/BH.jpg 2022 AEI Speaker Series - Brian Henderson View presentation slides https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/cf9aca26-e61a-4be6-a7e4-2be4c60a7dae/ADL4.jpg 2022 AEI Speaker Series - Aimee Diaz Lyon View presentation slides. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/74108e46-ab26-4826-9aa1-ab00d2bb9a62/RDW+2022+panel+discussion+invite.jpg 2022 AEI Speaker Series - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://haystackproject.org/speaker-series daily 0.75 2026-04-02 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771945778-X2S8FLXWKZRRUI06C3M9/Blue-Banner.png Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613327075503-SUA2MYBC85GBKBZY3JCA/AEI+Logo_alt+font.png Speaker Series https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/0e3799bf-7c91-4af4-a931-1c578fa4e845/Screenshot+2024-09-17+at+6.32.13%E2%80%AFPM.png Speaker Series - M. Kay Scanlan Consilium Strategies Click Here to Review the Presentation https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/c1ced9e6-60e2-428d-bcef-f12e424aa3f6/Screenshot+2024-04-11+at+4.15.39%E2%80%AFPM.png Speaker Series - Ranjani Durham Senior Vice President, US Market Access at Bristol Myers Squibb https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/aa2a5cdd-9f33-43e5-8970-4eb49de47d4f/Screenshot+2024-01-29+at+12.18.41%E2%80%AFPM.png Speaker Series - Sarah Gilbert Deputy Chief of Staff for Representative Neal Dunn, the Leading Republican sponsor for H.R. 6094, the Protect Rare Act. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/ed3a4e2c-1030-4928-b961-ce6ef556734d/Screenshot+2023-09-12+at+4.26.04+PM.png Speaker Series - Michael Bagel Associate Vice President https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/35f8a872-dc20-4534-9bdd-c6236d333b81/Screenshot+2023-09-12+at+4.25.54+PM.png Speaker Series - Nissa Shaffi Associate Director of Public Policy for the Alliance of Community Health Plans https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/53345ebc-0300-4f77-8aec-06050c840f75/Screenshot+2023-09-12+at+4.23.16+PM.png Speaker Series - Matt Salo Founder and CEO of Salo Health Strategies https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/2147a0e6-a73a-4986-8c85-d8dc420ac5e7/Screenshot+2023-09-12+at+4.15.53+PM.png Speaker Series - Priscilla Parrilla Director, Vendor Drug Program Office of Medicaid and CHIP Services Texas Health and Human Services https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/e799e1fb-cbc3-4a8b-bc83-0fd6def42dac/Screenshot+2023-06-07+at+2.19.35+PM.png Speaker Series - Juliette Cubanski Deputy Director of the Program on Medicare Policy at KFF https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/3fc2e2ba-6296-40bc-9f75-65460e591b5a/Screenshot+2023-06-07+at+1.02.00+PM.png Speaker Series - Jodi G. Daniel Partner, Crowell & Moring; Managing Partner, Crowell Health Solutions Linkedin https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/d7f01ace-83e3-4701-9605-ae5af7c6b81e/Screen+Shot+2023-04-12+at+1.45.17+PM.png Speaker Series - Steve Usdin Senior Editor at BioCentury Publications LinkedIn Profile Click here to read Steve’s article in Biocentury: “The IRA is Coming Into Focus” https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/0f45671d-d1ae-4d2f-9c8e-a7ffc5054d10/Screenshot+2023-04-12+at+10.27.12+AM.png Speaker Series - Lisa Goldstein Heath Information Privacy Specialist with the US Department of Health and Human Services Office for Civil Rights LinkedIn Profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/fd12743b-d356-4059-8b9a-5bd23f2d86f7/Screen+Shot+2023-01-13+at+9.55.29+AM.jpg Speaker Series - Courtney Johnson Principal, Alpine Group Linkedin Profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/678915fc-e678-4b87-9db3-51476b0168bd/Screenshot+2023-08-23+at+10.33.20+AM.png Speaker Series - Brian Henderson View presentation slides https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/5aeba1d4-7a08-4e61-b519-6557e9f49440/Screenshot+2023-08-23+at+10.33.34+AM.png Speaker Series - Aimee Diaz Lyon View presentation slides. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/2f897f9e-34f9-40ad-ade3-eb7fce148ec0/Screenshot+2023-08-23+at+10.50.39+AM.png Speaker Series - Lewis Fermaglich, M.D., M.H.A Office of Orphan Products Development, Food and Drug Administration LinkedIn Profile Office of Orphan Products Development (OOPD)/FDA Resources and Links https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/d2d2b261-5d2d-4278-ba3d-4d9050a70107/Screenshot+2023-08-23+at+10.57.43+AM.png Speaker Series - Joni Rutter, Ph. D. LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/ca6e8672-aa35-4b22-8a7c-3329abfa6131/Screenshot+2023-08-23+at+10.57.55+AM.png Speaker Series - Eric Sid, M.D., M.H.A. LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/fc460c61-3352-4fdf-80ff-eb498008c460/Screenshot+2023-08-23+at+11.04.08+AM.png Speaker Series - Sana Raoof, MD, PhD Radiation Oncologist, Memorial Sloan Kettering Cancer Center LinkedIn profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/e6f278eb-4b7a-46dc-b719-0f5eaadb7718/Screenshot+2023-08-23+at+11.04.22+AM.png Speaker Series - Anna Howard Principal, Policy Development, Access to and Quality of Care at American Cancer Society Cancer Action Network. LinkedIn Profile https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/4f122c23-97a2-4cb5-9d3a-d67e10359596/Screenshot+2023-08-23+at+11.15.46+AM.png Speaker Series - Beth Roberts Health Partner, Hogan Lovells https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/27c4eaf5-e5e6-4f14-9035-d2fc4bf0138d/Screenshot+2023-08-23+at+11.22.08+AM.png Speaker Series - Hemi Tewarson, J.D., M.P.H. Executive Director, National Academy for State Health Policy (NASHP) https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/ecdc66fc-d067-4bbe-aa0a-ea6d1ce02c24/Screenshot+2023-08-23+at+11.26.39+AM.png Speaker Series - Sarah Shapiro Legislative Director, Representative Swalwell https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/17d99415-db27-4173-bec4-d70f933fccd7/Screenshot+2023-08-23+at+11.40.42+AM.png Speaker Series - John Coster Director, Division of Pharmacy, Center for Medicaid, CMS https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/4b2ecab9-c2de-42a4-b6ff-9393f4298ab5/Screenshot+2023-08-23+at+11.44.49+AM.png Speaker Series - Christina McCauley Senior Policy Advisor, Representative Matsui https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/24602914-9bd6-48b8-8876-ca9a17ce3e3d/Screenshot+2023-08-23+at+11.48.08+AM.png Speaker Series - Carly Paterson Khan PhD RN MPH Program Officer at Patient-Centered Outcomes Research Institute (PCORI) recording and learn more about PCORI grants https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/a975bd93-d529-4ae3-9b5f-96ecb7a58f9f/Screenshot+2023-08-23+at+11.50.57+AM.png Speaker Series - Matt Salo Executive Director at NATIONAL ASSOCIATION OF MEDICAID DIRECTORS Click here for Discussion Summary https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/95b62ce2-651c-4779-8bd9-678f4b88669d/Screenshot+2023-08-23+at+11.52.23+AM.png Speaker Series - Anne L Schwartz, PhD Executive Director, MACPAC Click the play button to view Anne’s most recent webinar with us! https://haystackproject.org/aoi daily 0.75 2023-03-22 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png Articles of Incorporation https://haystackproject.org/fda daily 0.75 2023-07-25 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1508554277189-4DQHNLAND48BEWP13ETF/Blue-Banner.png FDA https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584142175403-F9TUW9HU7V5VZM7QDD1E/image-asset.png FDA https://haystackproject.org/inflation-reduction-act daily 0.75 2023-07-25 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503632094274-CVH532B8N6V2BR92XBNY/Blue-Banner.png Inflation Reduction Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1584142001548-9SEGPGET5PZKJEWA5A7N/image-asset.png Inflation Reduction Act https://haystackproject.org/about-aei daily 0.75 2023-08-03 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1503771945778-X2S8FLXWKZRRUI06C3M9/Blue-Banner.png About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613327075503-SUA2MYBC85GBKBZY3JCA/AEI+Logo_alt+font.png About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613328411479-FBGICDHN88H4JNIZEIJ6/AEI%2BProgram%2Bvf_Page_1.jpg About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613328432034-3NYGPZ7GLIZJJBCS10IG/AEI%2BProgram%2Bvf_Page_2.jpg About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613328449643-V4J2HB1BZ8E8Q0PEMW9A/AEI%2BProgram%2Bvf_Page_3.jpg About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1613328468138-P284RWG6IG2FCIMTI2EH/AEI%2BProgram%2Bvf_Page_4.jpg About AEI https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/74108e46-ab26-4826-9aa1-ab00d2bb9a62/RDW+2022+panel+discussion+invite.jpg About AEI - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://haystackproject.org/protect-rare-act-one-pager daily 0.75 2023-08-04 https://haystackproject.org/heart-act daily 0.75 2025-02-20 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png HEART Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/54115d09-4989-4e53-aab8-dc9bc7d7c460/Screenshot+2024-09-18+at+1.41.28%E2%80%AFPM.png HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/53060659-5eb5-4e6a-932e-af25967924c6/Screenshot+2024-09-11+at+7.41.45%E2%80%AFPM.png HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/6f4b3a28-ecc8-4ec9-aad4-3192e418190c/Screenshot+2022-12-29+at+2.19.09+PM.png HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/6fad73e8-7fff-40f7-b267-bd3d45bf3875/pexels-brotin-biswas-518543.jpg HEART Act - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121787095-CE2XIQULR75VS29G9I7H/HEART+Act+Page+1.png HEART Act https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121852947-ZUNUSX8FG9C3RQVW6VUY/HEART+Act+Page+2.png HEART Act https://haystackproject.org/protect-rare daily 0.75 2026-02-16 https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/1616121690215-9U16J7EEJNC0APM3JCSO/Blue-Banner.png PROTECT Rare https://images.squarespace-cdn.com/content/v1/5966cc2220099e91326caaec/822acb29-767e-487a-97f8-75d795f43c01/pexels-karolina-grabowska-4021779.jpg PROTECT Rare - Everything you need to advocate for the PROTECT Rare Act! 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