RAREis

RAREis has been a member of Linktree for 6 years and joined in February 2020. The social media accounts linked to from RAREis are: • Facebook • Instagram Besides social media accounts, rareis___ has populated their site with: • Genetic Testing • RAREis Representation • RAREis Playlist • Thyroid Eyes • #ShareYourRare • #RAREis Resources • #RAREis Global Advocate Grant Webinar: Addressing Issues in the Global Rare Disease Community • Watch Now! #RAREis Global Advocate Grant Webinar • Celebrating Rare Disease Day 2023 • #RAREis Global Advocate Grant • Share Your #RAREis • Meghan's Story • #RAREis Blog: Meghan Aims for Ultimate Target: A Career in Paying It Forward • Rare Disease Diversity Survey • Genetic Testing for Rare and Undiagnosed Diseases (English) • Genetic Testing for Rare and Undiagnosed Diseases (Spanish) • Immune Deficiency Foundation • 2023 NDF GNEM Speaker Series with Tasia Valenza • Two Sisters Fighting Two Combined Rare Diseases • 10 Ways Anxiety 'Shows Up' With Rare Disease • Global Genes Caregiver Toolkit • Victoria's Story | RAREis Playlist • Resources for Mental Health - Give an Hour • #RAREis Playlist & Hope is Here • EURORDIS Ukraine Response • One Rare Experience • Global Advocate Grant Awardee Spotlight: PWSA • Global Advocate Grant Awardee Spotlight: LGS Foundation • Top Five Mental Health Resources for the Rare Disease Community • Everyday Life Foundation: Rare Diversity Hub • Global Advocate Grant Awardee Spotlight: Chordoma Foundation • RAREis Adoption Fund: A Gift of Adoption • Navigating Disability and Rare Medical Conditions as an Intercountry Adoptee • Global Advocate Grant Awardee Spotlight: Malan Syndrome Foundation • Global Advocate Grant Awardee Spotlight: AGO2 Association • Chronic Disease Awareness Day • Our Journey with Charcot-Marie-Tooth (CMT) • Making a Meaningful Difference • The 2023 #RAREis Global Advocate Grant Recipients • RARE ARTIST 2023 • #RAREis Transitions | Education and Employment • Serendipitous Dive into Advocacy • Life As a Mom, Caregiver, Advocate and X-Linked Carrier • Podcast: Rare on Air - EURORDIS • Newborn Screening Resources • Our Odyssey Virtual Meet-Ups • The Akari Foundation • 5 Tips for Practicing Self-Care With a Rare Disease • How to Prevent Flu • Keeping Patient Needs at the Heart of Medicine Development • #RAREis Beyond the Chart, Because We’re More than Our Diagnosis • Adoption Grants | Gift of Adoption Fund – Where we finish, a family starts. • A Woman With Many Roles • Travelers with Chronic Illnesses | Travelers' Health | CDC • International Day of People with Disabilities • #RAREis Representation • Black Pearl Awards - Photo Contest - EURORDIS • Working in Rare: A Mission Driven from Experience • RAREly Told Stories Workshop • Doug the Pug and his Humans Sing a Story for Rare Disease • #RAREis Your Voice • Register for #RAREis One Webinar • Organization for Rare Diseases - IndoUSRare • The E.WE Foundation • Caring for Rare Disease Caregivers • Rare Disease Day 2024 • Join the RAREis One Webinar! • Share Your Rare • Understanding ANCA-Associated Vasculitis (AAV) • Foundation for Sarcoidosis Research • #RAREis One • The Atlantic: What is it like to live with a RARE disease? • #RAREis One Webinar: WATCH NOW • #RAREis Scholarship Fund • What Is It Like to Live With a Rare Disease? • 2024 #RAREis Global Advocate Grant • Download the New #RAREis White Paper! • NORD State Report Card • Finding Support: Emotional and Mental Health Resources • June is PRIDE Month: Find resources for LGBTQIA+ in rare disease community • #RAREis One: Sally’s Story • #RAREis Transitions • #RAREis One: Gerard's Story • Register for Rare Across America! • Join the Community - Chronic Disease Awareness Day • Rob's #RAREis One Story - Two Disabled Dudes Podcast • Summer Trips: Traveling with a Chronic Illness • #RAREis One: Elly’s Story • Learn with the Open Academy - EURORDIS Open Academy • Notre Dame Students Rallying for Rare Diseases • Mental Health in Rare Disease: Taking Care of Your Mind Is Taking Care of Your Body • #RAREis One Stories • Rare Disease Education - NORD® RareEDU Program • Empowering Change and Elevating Voices: 2024 #RAREis Global Advocate Grant • Onno's #RAREis One Story - Two Disabled Dudes Podcast • Support from The Akari Foundation • Newborn Screening Saves Lives - The EveryLife Foundation • Adoption Grants | Gift of Adoption Fund • Explore the #RAREis Interactive Map • RAREisCommunity.com • Meeting Myself in The Middle: My MG Story • RARE Advocacy Exchange • Pursue Your Dreams through the #RAREis Scholarship Fund • NMOSD Won't Stop Me: GET TO KNOW MY NMO • RDDC Home Page • Every Life Foundation Scholarship • We All Want to Matter; We Want to be Seen • Mental Health Support from Global Genes • To the mom raising a child with a rare disease—I see you • TSC Alliance • Top Tips for Newly Diagnosed with a RARE Disease Top Tips for Newly Diagnosed with a RARE Disease • Learn About the Rare Disease Community: Meet Dr. Dr. Harsha Rajasimha • 2025 #RAREis Global Advocate Grant • Transitions • Rare Across America • Remember The Girls empowers women affected by X-linked conditions | Immune Deficiency Foundation • Pursuing her dreams: Plainview Valedictorian receives #RAREis scholarship - The Ardmoreite • Visit the #RAREis Blog • Hispanic Society Rare Diseases SHER | Sociedad Hispana de Enfermedades Raras en USA | • IgG4-RD Support and Education | IgG4ward Foundation" • Glossary of Medical Terms: Decoding the Language of Rare and Undiagnosed Conditions • rarediseases.org • Navigating a Forever Home with a Rare Disease: Daniel’s Story • Meet the 2025 Global Advocate Grant Recipients • 5 Ways to Support Loved Ones Affected by Rare Disease During the Holidays - Global Genes • Rare Disease Video - Genetic Testing for Rare and Undiagnosed Diseases - National Organization for Rare Disorders • everylifefoundation.org • Rare disease patient becomes researcher to help others • Turning Up the Volume on IgG4-RD Awareness and Diagnosis | Amgen • #RAREis Scholarship Fund - Scholarship America • What's the Real Story on Gout? • Supporting the People Behind Rare Disease Advocacy • Apply for the RAREis Community Grant • Finding Her Way Back • Explore 2026 advocacy summit details