RareCare^®

NORD’s Patient Assistance Programs

Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Alpha-1 Antitrypsin Deficiency Premium Copay Assistance

Temporarily Waitlisting

Phone: 855-567-3721 Email: alpha-1@rarediseases.org Fax: 203-349-3192

AT_05 (Amyloidosis) Study Travel Assistance

Referral Required

Phone: 203-701-7934 Email: AT05@rarediseases.org Fax: 203-266-1046

Resource(s): Attralus-AT-05_CTTL-flyer

atypical Hemolytic Uremic Syndrome (aHUS) Emergency Relief

Accepting Applications

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

atypical Hemolytic Uremic Syndrome (aHUS) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

Resource(s): aHUS-PAP-FAQ-10-2020

atypical Hemolytic Uremic Syndrome (aHUS) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

Resource(s): aHUS-PAP-FAQ-10-2020

Bardet-Biedl Syndrome (BBS) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-309-6751 Email: BBS@rarediseases.org Fax: 203-648-4881

Resource(s): PAP_PremCopay_BBS flyer, PAP_PremCopay_BBS-flyer SPANISH

Barth Syndrome Emergency Relief

Accepting Applications

Phone: 203-292-0293 Email: barthsyndrome_assist@rarediseases.org Fax: 475-206-0898

Resource(s): BarthSyndrome ERF Revised -3-2023

Barth Syndrome Travel Assistance Fund

Referral Required

Phone: 203-242-0497 Email: BSFTravelAssist@rarediseases.org Fax: 203-516-2398

Resource(s): Barth Syndrome Foundation Family Services Fund

Batten Disease CLN5 Clinical Trial Support

Accepting Applications

Phone: 203-405-0585 Email: BattenDisease@rarediseases.org Fax: 203-349-3836

Resource(s): BattenDisease-ClinicalTrial

Batten Disease Emergency Relief

Accepting Applications

Phone: 203-405-0585 Email: NordERF@rarediseases.org Fax: 203-349-3836

Resource(s): BattenDisease-ERF

Batten Disease Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-405-0585 Email: battendisease@rarediseases.org Fax: 203-349-3836

Resource(s): PAP_BattenPrem&Copay

Bile Acid Synthesis and Zellweger Spectrum Disorders Medical Assist

Accepting new applications and re-enrollments for current year

Phone: 877-291-7805 Email: BileAcidSynthesis@rarediseases.org Fax: 203-486-8803

Bile Acid Synthesis and Zellweger Spectrum Disorders Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 877-291-7805 Email: BileAcidSynthesis@rarediseases.org Fax: 203-486-8803

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-635-2644 Email: BPDCN@rarediseases.org Fax: 203-405-8178

Resource(s): BPDCN-PAP-FAQ-10-2020

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Emergency Relief

Accepting Applications

Phone: 203-635-2644 Email: BPDCN@rarediseases.org Fax: 203-405-8178

Resource(s): BPDCN-PAP-FAQ-10-2020

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Travel & Lodging Assistance

Accepting Applications

Phone: 203-616-4329 Email: BPDCNTravel@rarediseases.org Fax: 203-267-9529

Resource(s): BPDCN-PAP-FAQ-10-2020

Cerebrotendinous Xanthomatosis (CTX) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 800-999-6673 Email: ctx@rarediseases.org Fax: 203-349-8431

Chronic Granulomatous Disease (CGD) Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5096 Email: CGDassist@rarediseases.org Fax: 203-486-8462

Resource(s): CGD-PAP, CGD-PAP-Spanish

Chronic Granulomatous Disease (CGD) Emergency Relief

Accepting Applications

Phone: 855-201-5096 Email: NordERF@rarediseases.org Fax: 203-486-8462

Resource(s): CGD-PAP, CGD-PAP-Spanish

Chronic Granulomatous Disease (CGD) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5096 Email: CGDassist@rarediseases.org Fax: 203-486-8462

Resource(s): CGD-PAP, CGD-PAP-Spanish

Classical Homocystinuria (HCU) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4327 Email: hcu@rarediseases.org Fax: 203-635-4163

Resource(s): MedicalAssist_Classical HCU-Revised March 2024 (1)

Cushings Syndrome Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-864-4018 Email: cushings@rarediseases.org Fax: 203-517-0978

Cushings Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-864-4018 Email: cushings@rarediseases.org Fax: 203-517-0978

Cystinosis Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5087 Email: cystinosis_assist@rarediseases.org Fax: 203-486-8033

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinosis Emergency Relief

Accepting Applications

Phone: 855-201-5087 Email: NordERF@rarediseases.org Fax: 203-486-8033

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinosis Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5087 Email: cystinosis_assist@rarediseases.org Fax: 203-486-8033

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinuria Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-7975 Email: cystinuria@rarediseases.org Fax: 203-405-8778

Cystinuria Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-7975 Email: cystinuria@rarediseases.org Fax: 203-405-8778

DISC-1459 Erythropoietic Protoporphyria (EPP) Study Travel & Lodging Assistance

Referral Required

Phone: 203-263-9188 Email: EPP@rarediseases.org Fax: 203-621-3238

Duchenne Muscular Dystrophy Medical Assistance

Temporarily Waitlisting

Phone: 866-218-8172 Email: DMD@rarediseases.org Fax: 203-263-9597

Resource(s): DMD-PAP

Duchenne Muscular Dystrophy Premium Copay Assistance

Temporarily Waitlisting

Phone: 866-218-8172 Email: DMD@rarediseases.org Fax: 203-263-9597

Resource(s): DMD-PAP

Eva’s Butterfly Wishes Experience for Rare Children (5 and under)

Accepting Applications

Phone: 877-291-7813 Email: EvasButterflyWishes@rarediseases.org Fax: 203-486-8130

Resource(s): Evas-Butterfly-Wishes-for RareChildren-revised

Fabry Disease Medical Assistance

Accepting new applications for current year

Phone: 203-433-2455 Email: Fabry@rarediseases.org Fax: 203-643-2020

Resource(s): Fabry_PAP_MedicalAssist

Fabry Disease Premium Copay Assistance

Accepting new applications for current year

Phone: 203-433-2455 Email: Fabry@rarediseases.org Fax: 203-643-2020

Resource(s): Fabry_PAP_PremCopay

Floxuridine Medication Assistance

Accepting Applications

Phone: 203-516-0962 Email: floxuridine@rarediseases.org Fax: 203-207-9896

Resource(s): Floxuridine-Medication Assistance -12-2023

Gaucher’s Disease Premium Copay Assistance

Not yet accepting applications for current year

Phone: 203-296-3486 Email: gaucherdiseases@rarediseases.org Fax: 203-349-3189

Guillain-Barre Emergency Relief Assistance

Accepting new applications for current year

Phone: 203-309-3896 Email: GBSassistance@rarediseases.org Fax: 203-740-1862

Resource(s): GBS_PAP_EmergRelief_06_2023

Hemophilia Emergency Relief

Temporarily Waitlisting

Phone: 203-514-7192 Email: hemophilia@rarediseases.org Fax: 475-204-3597

Resource(s): EmergRelief_Hemophilia (2), EmergRelief_Hemophilia-SPANISH (2)

Hunter Syndrome Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-694-0412 Email: huntersyndrome@rarediseases.org Fax: 203-349-3190

Hunter Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-694-0412 Email: huntersyndrome@rarediseases.org Fax: 203-349-3190

Hurricane & Natural Disasters Emergency Relief

Accepting Applications

Phone: 877-291-8082 Email: hurricane@rarediseases.org Fax: 203-486-8941

Hypophosphatasia (HPP) Emergency Relief

Accepting Applications

Phone: 866-828-8902 Email: NordERF@rarediseases.org Fax: 203-349-8446

Hypophosphatasia (HPP) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-828-8902 Email: hpp@rarediseases.org Fax: 203-349-8446

Resource(s): HPP-PAP

Hypophosphatasia (HPP) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-828-8902 Email: hpp@rarediseases.org Fax: 203-349-8446

Resource(s): HPP-PAP

IgA Nephropathy Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-309-3276 Email: IGAnephropathy@rarediseases.org Fax: 475-206-0857

IgA Nephropathy Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-309-3276 Email: IgAnephropathy@rarediseases.org Fax: 475-206-0857

IWMF (Waldenstrom Macroglobulinemia) Travel and Lodging Assistance

Accepting Applications

Phone: 203-308-5902 Email: IWMFtravel@rarediseases.org Fax: 203-293-9613

Resource(s): IWMF T&L-revised June2023 (1)

Lambert-Eaton Myasthenic Syndrome (LEMS) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4308 Email: LEMS@rarediseases.org Fax: 203-349-3198

Resource(s): LEMS-PAP

Lennox-Gastaut syndrome (LGS) Premium Copay Assist

Accepting new applications and re-enrollments for current year

Phone: 855-864-4028 Email: lgsseizures@rarediseases.org Fax: 203-614-1713

Morquio A Emergency Relief

Accepting Applications

Phone: 844-675-2354 Email: NordERF@rarediseases.org Fax: 203-349-3200

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.ubermenu-item-level-0 > .ubermenu-submenu-type-stack{position:relative;}.ubermenu-responsive .ubermenu-submenu-type-stack .ubermenu-column,.ubermenu-responsive .ubermenu-submenu-type-stack .ubermenu-column-auto{width:100%;max-width:100%;}.ubermenu-responsive .ubermenu-item-mini{min-width:0;width:auto;float:left;clear:none !important;}.ubermenu-responsive .ubermenu-item.ubermenu-item-mini > a.ubermenu-target{padding-left:20px;padding-right:20px;}.ubermenu-responsive .ubermenu-item.ubermenu-hide-mobile{display:none !important;}.ubermenu-responsive.ubermenu-hide-bkgs .ubermenu-submenu.ubermenu-submenu-bkg-img{background-image:none;}.ubermenu-responsive.ubermenu-hide-bkgs .ubermenu-submenu.ubermenu-submenu-bkg-img.nitro-lazy{background-image:none !important;}.ubermenu.ubermenu-responsive .ubermenu-item-level-0.ubermenu-item-mini{min-width:0;width:auto;}.ubermenu-vertical .ubermenu-item.ubermenu-item-level-0{width:100%;}.ubermenu-vertical.ubermenu-sub-indicators 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.ubermenu-target > .ubermenu-sub-indicator{display:none;}.ubermenu .ubermenu-tabs .ubermenu-tab-content-panel{box-shadow:0 5px 10px rgba(0,0,0,.075);}.ubermenu .ubermenu-submenu-rtl{direction:ltr;}.ubermenu.ubermenu-mobile-modal{position:fixed;z-index:9999999;opacity:1;top:0;left:0;width:100%;width:100vw;max-width:100%;max-width:100vw;height:100%;height:calc(100vh - calc(100vh - 100%));height:-webkit-fill-available;max-height:calc(100vh - calc(100vh - 100%));max-height:-webkit-fill-available;border:none;box-sizing:border-box;display:flex;flex-direction:column;justify-content:flex-start;overflow-y:auto !important;overflow-x:hidden !important;overscroll-behavior:contain;transform:scale(1);transition-duration:.1s;transition-property:all;}.ubermenu.ubermenu-mobile-modal.ubermenu-mobile-accordion.ubermenu-interaction-press{overflow-y:hidden !important;}.ubermenu.ubermenu-mobile-modal.ubermenu-responsive-collapse{overflow:hidden 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.ubermenu-item > .ubermenu-target,.ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{padding-left:calc(var(--ubermenu-accordion-indent) * 4);}.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target,.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{padding-left:0;padding-right:calc(var(--ubermenu-accordion-indent) * 2);}.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target,.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{padding-left:0;padding-right:calc(var(--ubermenu-accordion-indent) * 3);}.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target,.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{padding-left:0;padding-right:calc(var(--ubermenu-accordion-indent) * 4);}.ubermenu-responsive-toggle{display:block;}}@media screen and (max-width: 480px){.ubermenu.ubermenu-responsive .ubermenu-item-level-0{width:100%;}.ubermenu.ubermenu-responsive .ubermenu-column,.ubermenu.ubermenu-responsive .ubermenu-column-auto{min-width:100%;}.ubermenu .ubermenu-autocolumn:not(:first-child),.ubermenu .ubermenu-autocolumn:not(:first-child) .ubermenu-submenu-type-stack{padding-top:0;}.ubermenu .ubermenu-autocolumn:not(:last-child),.ubermenu .ubermenu-autocolumn:not(:last-child) .ubermenu-submenu-type-stack{padding-bottom:0;}.ubermenu .ubermenu-autocolumn > .ubermenu-submenu-type-stack > .ubermenu-item-normal:first-child{margin-top:0;}.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item > .ubermenu-submenu-drop,.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab > .ubermenu-tab-content-panel{box-shadow:none;box-sizing:border-box;border-left:none;border-right:none;}.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item.ubermenu-active > .ubermenu-submenu-drop,.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab.ubermenu-active > .ubermenu-tab-content-panel{position:static;}}.ubermenu-main .ubermenu-nav .ubermenu-item.ubermenu-item-level-0 > .ubermenu-target{font-weight:600;}.ubermenu-main .ubermenu-item-level-0 > .ubermenu-target{color:#0f131b;padding-left:12px;padding-right:12px;}.ubermenu-main 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.ubermenu-submenu.ubermenu-submenu-type-stack > .ubermenu-item-normal > .ubermenu-target,.ubermenu-main .ubermenu-submenu.ubermenu-submenu-padded{padding:5px;}.ubermenu-main .ubermenu-grid-row{padding-right:5px;}.ubermenu-main .ubermenu-grid-row .ubermenu-target{padding-right:0;}.ubermenu-main.ubermenu-sub-indicators .ubermenu-submenu :not(.ubermenu-tabs-layout-right) .ubermenu-has-submenu-drop > .ubermenu-target{padding-right:25px;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target,.ubermenu-main .ubermenu-tab > .ubermenu-target{font-size:16px;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{color:#00558c;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target:hover{color:#00558c;}.ubermenu-main .ubermenu-nav .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{font-weight:600;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header.ubermenu-has-submenu-stack > .ubermenu-target{border:none;}.ubermenu-main .ubermenu-submenu-type-stack{padding-top:0;}.ubermenu-premasthead .ubermenu-nav .ubermenu-item.ubermenu-item-level-0 > .ubermenu-target{font-weight:500;}.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-target{color:#0f131b;padding-left:8px;padding-right:8px;}.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-item > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-parent > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-ancestor > .ubermenu-target{color:#fc4c02;}.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-custom-content.ubermenu-custom-content-padded{padding-top:6px;padding-bottom:6px;}.ubermenu-premasthead.ubermenu-sub-indicators .ubermenu-item-level-0.ubermenu-has-submenu-drop > .ubermenu-target:not(.ubermenu-noindicator){padding-right:23px;}.ubermenu-premasthead.ubermenu-sub-indicators 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.ubermenu-target,.ubermenu .ubermenu-item.ubermenu-item-13736 > .ubermenu-content-block,.ubermenu .ubermenu-item.ubermenu-item-13736.ubermenu-custom-content-padded{padding:12px 5px 37px 5px;}.ubermenu .ubermenu-item.ubermenu-item-13737 > .ubermenu-target,.ubermenu .ubermenu-item.ubermenu-item-13737 > .ubermenu-content-block,.ubermenu .ubermenu-item.ubermenu-item-13737.ubermenu-custom-content-padded{padding:12px 5px 52px 5px;}section.nord-layout img{max-width:100%;height:auto;}.page-id-101076 .su-spoiler-content{margin:0 !important;padding:0 !important;}.nord-rare-giving-list{display:flex;flex-wrap:wrap;}.membership-level-wrap{}.page-id-147 .fcl-3-columns-content .col-content-wrapper:nth-of-type(5){flex-basis:33.3%;}.logo-grid{display:flex;flex-wrap:wrap;}#nord-animated-logo,#ani-scene-1{width:304px;height:103px;position:relative;}#animate-canvas{position:absolute;width:304px;height:300px;top:0;left:0;}#ani-scene-1{display:flex;flex-direction:column;align-items:center;justify-content:center;position:relative;z-index:3;}#ani-scene-1 > span{position:relative;font-weight:bold;font-size:1.5rem;}#ani-scene-1 > span:first-of-type{color:#079bbd;-webkit-animation:fade-in-bottom 1s cubic-bezier(.39,.575,.565,1) 1s both;animation:fade-in-bottom .6s cubic-bezier(.39,.575,.565,1) 2 sboth;}#ani-scene-1 > span:last-of-type{color:#fc4c02;-webkit-animation:fade-in-bottom 1s cubic-bezier(.39,.575,.565,1) 2s both;animation:fade-in-bottom 1s cubic-bezier(.39,.575,.565,1) 2s both;}#ani-scene-2{opacity:0;position:absolute;z-index:4;top:0;left:0;}@-webkit-keyframes fade-in-bottom{0%{-webkit-transform:translateY(50px);transform:translateY(50px);opacity:0;}100%{-webkit-transform:translateY(0);transform:translateY(0);opacity:1;}}@keyframes fade-in-bottom{0%{-webkit-transform:translateY(50px);transform:translateY(50px);opacity:0;}100%{-webkit-transform:translateY(0);transform:translateY(0);opacity:1;}}@-webkit-keyframes flip-in-hor-top{0%{-webkit-transform:rotateX(-80deg);transform:rotateX(-80deg);opacity:0;}100%{-webkit-transform:rotateX(0);transform:rotateX(0);opacity:1;}}@keyframes flip-in-hor-top{0%{-webkit-transform:rotateX(-80deg);transform:rotateX(-80deg);opacity:0;}100%{-webkit-transform:rotateX(0);transform:rotateX(0);opacity:1;}}.flip-in-hor-top{-webkit-animation:flip-in-hor-top 1s cubic-bezier(.25,.46,.45,.94) both;animation:flip-in-hor-top 1s cubic-bezier(.25,.46,.45,.94) both;}.nord-search-filter-wrap{background-color:#f1f1f1;border:1px solid #dedede;border-radius:4px;padding:15px;}.nord-search-filter-wrap.wide form .search-filter-field-group{justify-content:flex-start;}.nord-search-filter-wrap input[type="search"],.nord-search-filter-wrap select{height:38px;padding:2px 7px;width:100%;max-width:100%;border-radius:4px;}.nord-search-filter-wrap input[type="submit"]{display:flex;width:100%;height:38px;font-weight:600;align-items:center;justify-content:center;cursor:pointer;}.search-filter-field-group{margin-bottom:10px;}.nord-search-filter-wrap label{font-weight:600;}.nord-search-filter-wrap.wide{margin-top:2rem;margin-bottom:2rem;}.nord-search-filter-wrap.wide form{display:flex;flex-wrap:wrap;margin-left:-10px;margin-right:-10px;}.nord-search-filter-wrap.wide form .search-filter-field-group{display:flex;width:calc(100% / 3 - 20px);margin:10px;flex-direction:column;justify-content:space-between;}.nord-search-filter-wrap.wide input[type="submit"]{margin-top:10px;margin-right:10px;margin-left:10px;}.nord-ajax-results + .pagination-wrapper{margin-top:1rem;margin-bottom:4rem;}@media screen and (max-width:650px){.nord-search-filter-wrap.wide form .search-filter-field-group{width:100% !important;margin-left:0;margin-right:0;}}