Resources for young adult patients from our Virtual Health Advocacy Summit!

Dysautonomia:

  • What is POTS

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

  • Dr. Pace/Metrodora Institute

https://www.metrodora.co/

  • Dysautonomia International

https://dysautonomiainternational.org/

  • Facebook Support Groups

https://dysautonomiainternational.org/page.php?ID=24

  • Dysautonomia Clinic/Dr. Blitshteyn

https://www.dysautonomiaclinic.com/

Art Workshop:

Medical Trauma and Growth:

  • Dr. Amanda Feinstein - Yoga on YouTube

https://www.youtube.com/channel/UCUmfgP-b0hK7-SsS0N2oAxw

  • Better Sleep App

https://www.bettersleep.com/

  • National Alliance on Mental Illness (NAMI)

https://www.nami.org/Home

  • National Suicide & Crisis LifeLine: Call or text 988 or chat

988lifeline.org

  • American Psychology Association

https://www.apa.org/topics/mental-health/help-emotional-crisis

  • SAMHSA’s National Helpline

https://www.samhsa.gov/find-help/national-helpline

Free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing a mental health crisis. 1-800-662-HELP (4357) or TTY: 1-800-487-4889

  • Crisis Text Hotline: Text “HELLO” to 741741

Available 24 hours a day, seven days a week throughout the U.S. Serves anyone, in any type of crisis, connecting them with a crisis counselor who can provide support and information.

Grassroots Activism:

  • Asian Americans with Disabilities Initiative

https://www.aadinitiative.org/

  • Health Justice Commons

https://www.healthjusticecommons.org/

  • MAD - Mutual Aid Diabetes

https://mutualaiddiabetes.com/

Decolonizing Patient Advocacy:

  • Chronic Pain India

https://chronicpainindia.com/

  • Africa Sickle Cell Organization

https://africasicklecell.org/

  • Crohn's & Colitis Ethiopia

https://ibdeth.org/

Diagnosed: Grief, Identity, Acceptance:

  • Crohn’s and Colitis Young Adult Network

https://www.ccyanetwork.org/

  • Generation Patient Virtual Community Meetings

https://generationpatient.org/virtual-meetings




Neurodivergence Resources:

  • AASPIRE Healthcare Toolkit

https://www.rwjbh.org/documents/csh/AASPIRE-Healthcare-tool-kit.pdf

  • Autistic Self Advocacy Network (ASAN)

https://autisticadvocacy.org/

https://morenikego.com/projects/

https://aaspire.org/

Global Access to Medicines:

  • Universities Allied for Essential Medicines

https://www.uaem.org/

  • Generation Patient’s (Health) Policy Lab

https://www.hplab.org/



Higher education resources from Generation Patient:

  • Accommodations 101/Overview

https://docs.google.com/document/d/1HM0BgrNEq8aOS7VasV6hpALcquv4BaELTTVfgRxlRNo/edit

  • Accommodations Letter Template from Your Doctor/Clinician

https://docs.google.com/document/d/1ffxzmr60rnyXpG08ngTrLKhL3vucRASc0fGhsnGdWvA/edit

  • Proceedings: Roundtable on Higher Education and Chronic Medical Disabilities

https://static1.squarespace.com/static/5c11eb6ab40b9daef16158a9/t/627b11e9737ecf2abbc4bf81/1652232690402/Roundtable+Proceedings.pdf

Movement and Mindfulness:

  • Noa Porten’s class schedule and newsletter

https://mailchi.mp/376135183f7c/noa




Closing Session with Selma Blair and Troy Nankin:

  • You can watch the documentary Introducing, Selma Blair on Amazon Prime and Discovery+

  • See Selma on Dancing With the Stars, all-new episodes Mondays at 8p ET/5p PT on Disney+

  • You can also check out Selma’s memoir Mean Baby: A Memoir of Growing Up which is also available on Amazon

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