Title: Unique | Understanding Rare Chromosome and Gene Disorders

URL: https://rarechromo.org/

Collection: Rare Diseases web archive

Description: Website from Unique Rare Chromo. This site includes information regarding information and support for people suffering from rare chromosome disorders. There are links for families, professionals and ways to support the charity.

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Title: Undiagnosed Diseases Network

URL: https://undiagnosed.hms.harvard.edu/

Collection: Rare Diseases web archive

Description: Website from Undiagnosed Diseases Network. This is a research study funded by the National Institutes of Health and its purpose is to bring clinical and research experts together to help solve the most challenging medical mysteries with advanced technologies.

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Title: Ultragenyx

URL: https://www.ultragenyx.com/

Collection: Rare Diseases web archive

Description: Website from Ultragenyx which was founded to innovate medicines for rare and ultrarare diseases.

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Title: Travere Therapeutics

URL: https://travere.com/

Collection: Rare Diseases web archive

Description: Website from Travere Therapeutics, a company that helps identify, develop and deliver life-changing therapies for rare disease patients.

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Title: Therapeutics for Rare and Neglected Diseases (TRND) | National Center for Advancing Translational Sciences

URL: https://ncats.nih.gov/trnd

Collection: Rare Diseases web archive

Description: Website from National Center for Advancing Translational Sciences (NCATS) which is part of the U.S. Department of Health and Human Services through the National Institutes of Health. The mission of NCATS is to transform he translational process so that the new treatments and cures for disease can be delivered to patients faster.

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Title: Spoonful of Stripes – Zebra stripes and every day life.

URL: https://spoonfulofstripes.wordpress.com/

Collection: Rare Diseases web archive

Description: Website of blogs from Spoonful of Stripes.

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Title: Southeast Regional Genetics Network (SERN) | Improving health equity and outcomes in individuals with genetic conditions

URL: https://southeastgenetics.org/

Collection: Rare Diseases web archive

Description: Website from Southeast Regional Genetics Network (SERN). This network provides care to Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee. SERN provides health equity to individuals with genetic conditions, as well as reduce morbidity and mortality, and improve the quality of genetic services.

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Title: Soligenix

URL: https://www.soligenix.com/

Collection: Rare Diseases web archive

Description: Website from Soligenix, Inc. which is a late-stage biopharmaceutical company focused on developing and commercializing products to treat rare diseases where there is an unmet medical need. They have two areas of focus: specialized biotherapeutics and public health solutions.

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Title: Sidewalks and Stairwells – Finding My Strength on the Road to Disability

URL: https://sidewalksandstairwells.com/

Collection: Rare Diseases web archive

Description: Website of blogs by Sidewalks and Stairwells, started by Chris Anselmo. He created his site to bring light to Miyoshi Myopathy.

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Title: RUN

URL: https://rareundiagnosed.org/

Collection: Rare Diseases web archive

Description: Website from RUN which helps care for families by asking whole genome sequencing available through insurance.

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Title: ResearchMatch

URL: https://www.researchmatch.org/

Collection: Rare Diseases web archive

Description: Website from ResearchMatch which helps patients find the right clinical trial or research study for their needs.

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Title: RegenxBio

URL: https://www.regenxbio.com/

Collection: Rare Diseases web archive

Description: Website from REGENXBIO, a leading clinical-stage biotechnology company seeking to improve lives through the curative potential of gene therapy.

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Title: Rareshare

URL: https://rareshare.org/

Collection: Rare Diseases web archive

Description: Website from RareShare, which is a social hub serving rare disorder communities. They allow direct exchange of information among patients, families, research organizations and healthcare professionals to improve the lives of those affected.

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Title: RareGuru Blog | RareGuru

URL: https://rareguru.com/blog

Collection: Rare Diseases web archive

Description: A collection of blogs from RareGuru, a tool to connect and empower patients, caregivers, teens, and parents with rare diseases, disorders, and syndromes across the globe.

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Title: Rare Patient Voice

URL: https://rarepatientvoice.com/

Collection: Rare Diseases web archive

Description: Website from Rare Patient Voice which connects patients and family caregivers of rare disease patients with opportunities to share opinions with companies and researchers by participating in studies.

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Title: Rare New England

URL: https://www.rarenewengland.org/

Collection: Rare Diseases web archive

Description: Website from Rare New England (RNE). RNE offers educational opportunities and builds foundations to improve patient quality of life and support the professional needs of healthcare providers.

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Title: Rare Mamas

URL: https://raremamas.com/

Collection: Rare Diseases web archive

Description: Website for Rare Mamas, a resource that supports mothers and caregivers of children with rare diseases.

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Title: Rare Genomics Institute

URL: https://www.raregenomics.org/

Collection: Rare Diseases web archive

Description: Website from Rare Genomics Institute (RG). It is a non-profit that provides access to genomic research, technologies, physicians and scientists around the globe.

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Title: Rare Genomes Project

URL: https://raregenomes.org/

Collection: Rare Diseases web archive

Description: Website for the Rare Genomes Project, which is part of the Broad Institute of MIT and Harvard. It is a team of researchers, physicians, software designers, genetic counselors, and study coordinators working to make advances in genomic sequencing to change medicine in order to make them more broadly available to families with rare and undiagnosed conditions.

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Title: Rare Diseases International

URL: https://www.rarediseasesinternational.org/

Collection: Rare Diseases web archive

Description: Website from Rare Diseases International (RDI) which is a global alliance of people living with rare diseases. Its mission is to be a voice for patients around the world, to advocate for rare diseases as an international public health priority and to represent its embers and enhance their capacities.

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Title: Rare Disease Research

URL: https://www.rarediseaseresearch.com/

Collection: Rare Diseases web archive

Description: Website from Rare Disease Research, an independent clinical research site dedicated to conducting clinical research, accelerating the development of safe and effective treatments for rare diseases, and providing access to innovative investigational therapies to patients with rare diseases.

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Title: Rare Disease Podcast — Once Upon A Gene

URL: https://effieparks.com/blog

Collection: Rare Diseases web archive

Description: Blog from Once Upon a Gene.

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Title: Rare Disease Organization Connecting India & US – IndoUSrare

URL: https://www.indousrare.org/

Collection: Rare Diseases web archive

Description: Website from Indousrare which was created to educate, empower, and advocate for diverse patients with rare diseases in the US, India and globally. They want to help establish and sustain patient-centric education, awareness, training, research, and engagement programs.

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Title: Rare Disease News, Perspectives & Resources - Rare Disease Advisor

URL: https://www.rarediseaseadvisor.com/

Collection: Rare Diseases web archive

Description: Website from RareDiseaseAdvisor.com. This site has sources for news, perspectives, and resources for clinicians who treat patients with rare diseases.

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Title: Rare Disease Diversity Coalition (RDDC)

URL: https://www.rarediseasediversity.org/

Collection: Rare Diseases web archive

Description: Website from Rare Disease Diversity Coalition. The coalition helps their partners and advisory council's to identify evidence-based solutions to help the disproportionate burden of rare diseases on marginalized populations. Links to patient stories, news, events, and getting involved.

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Title: Rare Disease Day

URL: https://www.rarediseaseday.org/

Collection: Rare Diseases web archive

Description: Website for Rare Disease Day. Rare Disease Day is a global movement on rare disease that helps spread awareness as well as works towards health equity for those with rare diseases. Links for more information about the Day as well as locations for events around the world.

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Title: Rare Collective

URL: https://rarecollective.org/

Collection: Rare Diseases web archive

Description: Website from Rare Collective. They partner with industry, patient organizations, and researchers to guide the development, commercialization, and adoption of innovative therapies and devices for rare disease communities.

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Title: Rare Blogger

URL: https://www.rareblogger.com/

Collection: Rare Diseases web archive

Description: Website of blogs focusing on individuals with lysosomal storage disorders.

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Title: Rare Advocacy Movement

URL: https://www.rareadvocacymovement.com/

Collection: Rare Diseases web archive

Description: Website from Rare Advocacy Movement (RAM) which is the first community-based network dedicated to protecting the interests of the global community of people living with rare conditions, chronic and progressive disabilities, medic complexities and their families.

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Title: Rallybio

URL: https://rallybio.com/

Collection: Rare Diseases web archive

Description: Website from Rallybio, a clinical-state biotechnology company. They have a mission to discover, develop, manufacture and deliver therapies to improve the lives of patients with severe and rare diseases.

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Title: RaDaR

URL: https://registries.ncats.nih.gov/

Collection: Rare Diseases web archive

Description: Website from Rare Disease Registry Program (RaDaR), which is part of the National Center for Advancing Translational Sciences (NCTS). RaDaR provides guidance for setting up and maintaining high-quality registries that are based on best practices and data standards.

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Title: RAREisCommunity.com

URL: https://www.rareiscommunity.com/

Collection: Rare Diseases web archive

Description: Website from #RAREis... A social campaign started by Horizon Therapeutics to help add voices and faces to rare disease experiences.

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Title: RARE-X – Patient's Data Powering Progress

URL: https://rare-x.org/

Collection: Rare Diseases web archive

Description: Website from RareX which helps bring together data easily for patients in the rare community to access.

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Title: Probably Genetic | Get answers for your symptoms

URL: https://www.probablygenetic.com/

Collection: Rare Diseases web archive

Description: Probably Genetic’s mission is to help 200 million rare genetic disease patients find out what they have through at-home testing.

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Title: PTC Therapeutics | Pioneers in Rare Disease Treatments

URL: https://www.ptcbio.com/

Collection: Rare Diseases web archive

Description: Website from PTC Therapeutics who has expertise in RNA biology to discover and develop treatments for patients living with rare diseases.

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Title: PAN Foundation

URL: https://www.panfoundation.org/

Collection: Rare Diseases web archive

Description: Website from Patient Access Network (PAN) Foundation. It is one of the world's largest charitable organizations that provides financial assistance to people who can't afford prescription medications.

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Title: Our Odyssey

URL: https://ourodyssey.org/

Collection: Rare Diseases web archive

Description: Website from Our Odyssey. This website is for young adults to connect with each other with social and emotional support for rare or chronic conditions. The website gives links for meetups and different programs, as well as a link to the blog.

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Title: Orphan Drugs | HRSA

URL: https://www.hrsa.gov/opa/program-requirements/orphan-drug-exclusion

Collection: Rare Diseases web archive

Description: Webpage from HSRA on Orphan Drugs.

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Title: Orphan Disease Center

URL: https://www.orphandiseasecenter.med.upenn.edu/

Collection: Rare Diseases web archive

Description: Website from The Orphan Disease Center which helps assure access to transformative therapies for all rare disease communities.

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Title: Open Treatments Foundation

URL: https://www.opentreatments.org/

Collection: Rare Diseases web archive

Description: Website for OpenTreatments, a software platform that streamlines therapy development for rare diseases regardless of rarity and geography.

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Title: Official Home Page of the Apellis Pharmaceuticals Corporate Site | Apellis Pharmaceuticals

URL: https://apellis.com/

Collection: Rare Diseases web archive

Description: Website for Apellis, which focuses on developing life-changing medicines for some of the most challenging diseases. They also run clinical and pre-clinical programs.

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Title: New England Regional Genetics Network | University of New Hampshire

URL: https://www.negenetics.org/

Collection: Rare Diseases web archive

Description: Website from New England Regional Genetics Network (NERGN). The network works to improve knowledge of and access to genetic services, expand the use of telehealth for genetic consults and care, and other objectives. The network covers Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut.

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Title: National Organization for Rare Disorders (NORD)

URL: https://rarediseases.org/

Collection: Rare Diseases web archive

Description: Website from National Organization for Rare Disorders (NORD). NORD is a non-profit that helps and supports people with rare diseases. Links to patient assistance programs, rare disease database, news and events, and more.

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Title: National Human Genome Research Institute Home | NHGRI

URL: https://genome.gov/

Collection: Rare Diseases web archive

Description: Website for the National Human Genome Research Institute, whose mission is to accelerate scientific and medical breakthroughs that improve human health through cutting-edge research, developing new technologies, and studying the impact of genomics on society.

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Title: National Genetics Education and Family Support Center

URL: https://nationalfamilycenter.org/

Collection: Rare Diseases web archive

Description: The National Genetics Education and Family Support Center (Family Center) works to increase access to genetic services by promoting and strengthening family engagement in the genetic healthcare delivery system.

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Title: National Coordinating Center for the Regional Genetics Networks

URL: https://nccrcg.org/

Collection: Rare Diseases web archive

Description: The National Coordinating Center for the Regional Genetics Networks improves access to genetic services for underserved populations. The organization works with the seven Regional Genetics Networks (RGNs) and the National Genetics Education and Family Support Center (Family Center) and developing resources related to education (general genetics and genetics policy), workforce development, and raising awareness about public health genetics.

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Title: NORD Running for Rare

URL: https://runningforrare.org/

Collection: Rare Diseases web archive

Description: Website from NORD Running for Rare, a charity running program run through NORD. This program aims to raise awareness for rare diseases while fundraising to contribute to NORD's mission to drive public policy, accelerate research and improve care for people living with rare diseases.

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Title: NORD Rare Diseases

URL: https://rarediseases.org/nord-en-espanol/

Collection: Rare Diseases web archive

Description: Website, in Spanish, from National Organization for Rare Disorders (NORD). NORD is a non-profit that helps and supports people with rare diseases. Links to patient assistance programs, rare disease database, news and events, and more.

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Title: Mountain States Regional Genetics Network

URL: https://www.mountainstatesgenetics.org/

Collection: Rare Diseases web archive

Description: Website from Mountain States Regional Genetics Network. This network is one of seven in the U.S. and covers Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah, and Wyoming. This network ensures that families have access to care regarding rare diseases.

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Title: Mitochondrial Disorders - YouTube

URL: https://www.youtube.com/watch?v=mGMkC52qc-8

Collection: Rare Diseases web archive

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Title: Midwest Genetics Collaborative – Midwest Genetics Collaborative

URL: https://midwestgenetics.org/

Collection: Rare Diseases web archive

Description: Website from Midwest Genetics Network (MGN) which works to improve equity in access to genetic services for medically underserved populations. The region includes Michigan, Minnesota, Illinois, Indiana, Wisconsin, Ohio, and Kentucky.

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Title: Medunik USA

URL: https://medunikusa.com/

Collection: Rare Diseases web archive

Description: Website from Medunik USA. They work to get orphan drugs to rare disease patients, especially medications that are not available in the US.

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Title: Learning more about Genetic Conditions: Common Questions for a Genetics Counselor - YouTube

URL: https://www.youtube.com/watch?v=f-kSHdUxp-Y

Collection: Rare Diseases web archive

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Title: Know Rare

URL: https://knowrare.com/

Collection: Rare Diseases web archive

Description: Website from KnowRare, which serves as a tool connecting rare disease patients with research and experts, an education hub providing resources for rare disease patients, and a place for community stories with insights to help individuals' rare disease journeys.

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Title: Intro to Genetics for Parents and School Personnel with NERGN - YouTube

URL: https://www.youtube.com/watch?v=3FmrRx-Ajvc

Collection: Rare Diseases web archive

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Title: Home | beyondthediagnosis

URL: https://www.beyondthediagnosis.org/

Collection: Rare Diseases web archive

Description: Website from Beyond the Diagnosis, an art exhibit that focuses on the rare disease patient with the goal of depicting all 7,000+ rare diseases through its portrait series.

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Title: Home | RareGuru

URL: https://rareguru.com/

Collection: Rare Diseases web archive

Description: Website from Rare Guru. This site was created to connect and empower patients, caregivers teens and parents with rare disease, disorders and syndromes across the globe.

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Title: Home | Rare Diseases Clinical Research Network

URL: https://www.rarediseasesnetwork.org/

Collection: Rare Diseases web archive

Description: Website from Rare Diseases Network. This site has connections to the National Institutes of Health's National Center for Advancing Translation Sciences. Their mission is to advance medical research on rare diseases. Links for patients and families, researchers and clinicians, and news and events.

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Title: Home - Western States Regional Genetics Network (WSRGN)

URL: https://www.westernstatesgenetics.org/

Collection: Rare Diseases web archive

Description: Website from Western States Regional Genetics Network (WSRGN). This network's mission is to provide access to genetic services and education to medically underserved populations. States that are in the network include Alaska, California, Guam, Hawaii, Idaho Oregon and Washington.

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Title: Home - Rare Coalition

URL: https://www.rarecoalition.com/

Collection: Rare Diseases web archive

Description: Website from Rare Disease Company Coalition. They represent life science companies committed to discovering, developing, and delivering rare disease treatments for their patients They also work to inform policymakers of the unique challenges faced in taking rare disease drugs from research to development to approval to manufacturing. They also advocate for government policies that enable positive changes to be realized for rare disease community.

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Title: Home - NYMAC - Regional Genetics Network

URL: https://nymacgenetics.org/

Collection: Rare Diseases web archive

Description: Website from NYMAC Regional Genetics Network. This network is run by various institutions. The region covers DC, Delaware, Maryland, New Jersey, New York, Pennsylvania, Puerto Rico, US Virgin Islands, Virginia and West Virginia.

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Title: Home - Genetic and Rare Diseases Information Center

URL: https://rarediseases.info.nih.gov/

Collection: Rare Diseases web archive

Description: Website from Genetic and Rare Diseases Information Center (GARD) through the National Center for Advancing Translation Sciences. GARD is a database for rare diseases where you can browse by disease. There are also links to routine data updates and collaborative data.

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Title: Heartland Regional Genetics Network

URL: https://www.heartlandcollaborative.org/

Collection: Rare Diseases web archive

Description: Website from Heartland Genetics Network which focuses on ensuring best possible outcomes for families with genetic disorders. The network covers Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota.

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Title: Global Genes

URL: https://globalgenes.org/

Collection: Rare Diseases web archive

Description: Website from Global Genes, non-profit organization dedicated to eliminating the burdens of rare diseases for patients and families globally.

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Title: Genomic Intelligence for Genetic Disease & Cancer

URL: https://www.genomenon.com/

Collection: Rare Diseases web archive

Description: Website from Genomenon, a genomic intelligence company hoping to be the first to curate the entire human genome. They are dedicated to improving the quality of patients' lives by uncovering the drivers of genetic disease and cancer.

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Title: Genetics Series: Newborn Screening & Early Hearing Detection and Intervention Program (7/29/2021) - YouTube

URL: https://www.youtube.com/watch?v=XjXLWgia_Gs

Collection: Rare Diseases web archive

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Title: Genetics Series: Back to School Tips for Children with Special Health Needs/Disabilities (8/8/2021) - YouTube

URL: https://www.youtube.com/watch?v=r6t4sU-XCsk

Collection: Rare Diseases web archive

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Title: Genetic Conditions - YouTube

URL: https://www.youtube.com/watch?v=SCe3m9Cp5Bk

Collection: Rare Diseases web archive

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Title: Genetic Alliance

URL: https://geneticalliance.org/

Collection: Rare Diseases web archive

Description: Website from Genetic Alliance which engages communities, individuals and families within the rare disease community. Their vision is to transform health systems to respond to the needs of the community.

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Title: GeneDx

URL: https://www.genedx.com/

Collection: Rare Diseases web archive

Description: Website from GeneDx which is focused on delivering personalized, actionable insights that improve health outcomes. They do exome and genome testing.

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Title: FDNA®

URL: https://www.fdna.com/

Collection: Rare Diseases web archive

Description: Website from FDNA, whose phenotyping technologies capture, structure and analyze human physiological data to produce actionable genomic insights.

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Title: EveryLife Foundation

URL: https://everylifefoundation.org/

Collection: Rare Diseases web archive

Description: Website from the EveryLife Foundation. This is a nonprofit organization that empowers the rare disease community, advocating for impactful science-driven legislation and policy. There are links to advocacy, policies, events and programs, as well as resources.

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Title: Enzyvant

URL: https://enzyvant.com/

Collection: Rare Diseases web archive

Description: Website from Enzyvant who collaborates connections with patients, caregivers academia, industry associations, advocacy and the government to accelerate transformative medicines that are needed.

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Title: Emmaus Medical, Inc.

URL: https://www.emmausmedical.com/

Collection: Rare Diseases web archive

Description: Website from Emmaus Life Sciences, Inc. It is a biopharmaceutical company engaged in discovery, development, and commercialization of innovative treatments and therapies primarily for rare and orphan diseases.

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Title: Cure Rare Disease

URL: https://www.cureraredisease.org/

Collection: Rare Diseases web archive

Description: Website from Cure Rare Disease which helps enable and finance the development of life-saving genetic medicines for rare and ultra-rare patient populations.

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Title: Clinical-stage Biopharmaceutical Company | Biohaven

URL: https://www.biohaven.com/

Collection: Rare Diseases web archive

Description: Website from Biohaven, a modern pharmaceutical company that is guided by science and inspired to change lives with unmet medical needs.

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Title: Caring for Rare Disease Caregivers

URL: https://www.rarecaregivers.org/

Collection: Rare Diseases web archive

Description: Website from Caregiver Action Network (CAN) which is the nation's leading family caregiver organization. It is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

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Title: CENTOGENE – The Rare Disease Company: centogene.com

URL: https://www.centogene.com/

Collection: Rare Diseases web archive

Description: Website from Centogene, a company whose mission is to cure 100 rare diseases in 10 years. They are the leading data-driven rare disease company.

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Title: Blog | Probably Genetic

URL: https://blog.probablygenetic.com/

Collection: Rare Diseases web archive

Description: Website of blogs from Probably Genetic.

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Title: Blog posts by and for the rare community | AllStripes

URL: https://www.allstripes.com/blogs

Collection: Rare Diseases web archive

Description: Website of blogs from AllStripes.

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Title: Avalo Therapeutics, Inc. (AVTX)

URL: https://www.avalotx.com/

Collection: Rare Diseases web archive

Description: Website from Avalo Therapeutics. They are a clinical stage technology company focused on the treatment of immune dysregulation by developing therapies that target the LIGHT-signaling network.

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Title: Asklepion Pharmaceuticals, LLC -

URL: https://www.asklepionpharm.com/

Collection: Rare Diseases web archive

Description: Website from Asklepion Pharmaceuticals, LLC. They work on drug research and development for large and small patient populations. They have partnerships with universities and other pharmaceutical companies, drug distributors, and financial assistance programs.

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Title: Amicus Therapeutics | Advancing Therapies to Treat Rare Diseases

URL: https://amicusrx.com/

Collection: Rare Diseases web archive

Description: Website from Amicus Therapeutics. They are a global biotechnology company at the forefront of advancing therapies for a range of rare and devastating diseases.

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Title: Alliance for Regenerative Medicine

URL: https://alliancerm.org/

Collection: Rare Diseases web archive

Description: Website from Alliance for Regenerative Medicine (ARM) which is the leading advocacy organization championing the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems and society.

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Title: AllStripes | Advance research for your rare disease

URL: https://www.allstripes.com/

Collection: Rare Diseases web archive

Description: Website from All Stripes Research which is a public benefit corporation. It is the leading research platform dedicated to rare diseases. It makes it easy for patients to contribute to new treatment research from home.

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Title: Alexion

URL: https://alexion.com/

Collection: Rare Diseases web archive

Description: Website from Alexion which researches rare diseases and develops medicines for them.

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Title: About — DISORDER: The Rare Disease Film Festival

URL: https://www.rarediseasefilmfestival.com/about2

Collection: Rare Diseases web archive

Description: Website from Disorder: The Rare Disease Film Festival.

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Title: ANGEL AID

URL: https://www.angelaidcares.org/

Collection: Rare Diseases web archive

Description: Website from Angel Aid which supports over 15,000 rare families across thirty-three countries. Angel Aid provides mental health and wellness services to rare families through sustainable psychological training, transformative retreats, and connective caregiver-to-caregiver multilingual network.

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Title: #Rareis Blog

URL: https://www.rareiscommunity.com/blog/

Collection: Rare Diseases web archive

Description: Website of blogs from #RAREis...

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