"I love Home - NORD (National Organization for Rare Disorders)"

2022-05-10 14:53:30

ScrollTo TopAboutNewsEventsContactPODCASTStore donate Advanced Search Menufor Patients and FamiliesInformation & ResourcesRare Disease InformationRare Disease Video LibraryPatient and Caregiver Resource CenterInformation on Clinical Trials and Research StudiesGene TherapyRare Disease Centers of ExcellenceCOVID-19 ResourcesHelp to Access MedicationsPatient Assistance ProgramsOther Financial AssistanceConnect with OthersFind a Patient OrganizationRare Disease Day®Patient StoriesTake ActionAttend EventsAdvocateSupport Closefor Patient OrganizationsJoin Membership NetworkValue of MembershipMembership CriteriaApply for MembershipNonprofitResourcesMembership BenefitsMembership ResourcesRareLaunch®Webinar SeriesDiversity, Equity & InclusionOther Ways to PartnerGrow your organizationPatient RegistriesAdvocacyRare Disease Day®RDCA-DAP®Membership ProfilesAbout our MembersMember ListRare Cancer Coalition™ Closefor Clinicians and ResearchersResourcesResources for Medical ProfessionalsRare Disease InformationResources for your PatientsContinuing Medical EducationResearch OpportunitiesResearch Grant ProgramRequests for ProposalsResearch Grant RecipientsConnectLend Your ExpertiseRare Disease Day® CloseNORD Rare Disease AdvocacyNORD’s Policy in ActionIssue OverviewsNORD on the IssuesNORD State Report CardNational PartnershipsTake Action LocallyJoin the Rare Action Network®Project RDACContact Your RepresentativesTake ActionRareInsights®RareInsights®5 Myths About Orphan Drugs and the Orphan Drug Act CloseGet InvolvedDonate NowGiveWays to GiveDonate to ResearchNORD® StoreEducateEducational InitiativesRaise AwarenessIdentify Rare Disease ExpertsJoinParticipate in EventsBecome a MemberRare Cancer Coalition™Employment OpportunitiesCorporate CouncilAbout the Corporate CouncilCurrent MembersCouncil Code of ConductJoin the Council Close More Info > What’s happening at NORD NORD Response to New Draft of the BBBANORD urges Congress to remove harmful provision which would gut a key incentive from the 1983 ODALearn more > NORD Rare Disease Centers of ExcellenceLearn more > NORD’s Educational Support ProgramLearn more > Diversity, Equity and InclusionLearn more > Tools and Resources The Rare Disease DatabaseSearch NORD’s Database for reports on more than 1,200 diseases. Search database > Patient & Caregiver Resource CenterFind free webinars, fact sheets, infographics and other helpful materials. View resources > Member ResourcesResources to help you start or grow your patient organization. View resources > Rare Action Network®Visit our new platform where rare disease patients can fundraise, communicate and advocate.  Start now > Patient Assistance ProgramNORD Patient Assistance Programs help patients obtain life-saving or life-sustaining medication. View programs > Rare Disease DayThe international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >NewsMaine Elevates Rare Disease Voices, Establishes State Advisory Council“Maine becomes the 23rd state to create a council that will help address the needs of rare disease patients and their families  ”Read more >Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council“ New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment”Read more >NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research“Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program ”Read more >What the Public Should Know: From the Mother of an Undiagnosed Child“Read Emily's story in honor of Undiagnosed Day on April 29.”Read more >Alone we are rare. Together we are strong.®For Patients and FamiliesFor Clinicians and ResearchersFor Patient OrganizationsAdvocateGet InvolvedHomeAboutNewsEventsContactCareersBrand Usage Guidelines Sign Up for NORD News!Follow NORD Site MapWebsite CreditsPrivacyCopyright ©2021 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization.Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. .sm-sub-menu .list-inline li {text-align:center;}