Kansas City, Missouri Sep 13, 2018 (Issuewire.com) - On September 28, 2018, rare disease stakeholders from around the globe will participate in the first ever virtual event designed for rare disease patients, caregivers, and advocates for the 1st Annual Rare Fair, a 100% virtual event. This annual event will bring together patients, caregivers, advocates, and rare disease stakeholders for the first time online to learn, share, and network. My City Med is pleased to announce their 2018 Charity Partner, The Children’s Inn at NIH. A portion of proceeds from all ticket sales will benefit The Inn.
My City Med is thrilled to announce our 2018 Keynote Speaker, Claire Bidwell Smith, noted grief therapist and author. Claire is the author of “The Rules of Inheritance”, “After This” and her latest offering, “Anxiety: The Missing Stage of Grief”. She will share her insights on managing grief as part of a diagnosis.
More than a dozen speakers are expected to participate in The Rare Fair, and the agenda will feature presentations that will help attendees navigate the complex world of rare disease. Highlighted sessions include: “Networking to a Cure”, “Self-Care for the Caregiver”, and “What Your Rare Disease Patient Wants You to Know” and more. Don't miss speakers like Jim Cavan (Backpack Health); Stacey Feuer, PsyD, MLD; Stephanie Fischer (Rare Advocate); Dr. Corey Iqbal; Ilana Jacqueline (Author); Taylor Kane (Patient Advocate - Remember the Girls); Eden Lord (CEO, My City Med); Scott Schliebner (PRA Health Sciences); Trisha Torrey (Founder & Director, APHA); Monica Weldon (Patient Advocate - Bridge the Gap); Shira Strongin (Founder, The Sick Chicks) and Congressman Kevin Yoder (KS-3).
Offerings also include a virtual patient education room filled with valuable information for patients and caregivers looking to manage a diagnosis, as well as exclusive patient networking rooms for FSGS and PKAN patients.
The Rare Fair is a source of support for patients and families whose lives have been affected by rare disease. Invitations to advocates, med students, physicians, and industry stakeholders have been extended to help immerse attendees in rare disease advocacy while gaining unique insights on patient and caregiver perspectives.
To date, Fair Sponsors and Exhibitors include: Presenting sponsor -My City Med, Retrophin – FSGS Room & Fair Sponsor), Parisi Artisan Coffee (In-Kind Sponsor), Global Genes, Backpack Health, Team Chief, Inc., The Cambria Lord Foundation, Bridge the Gap – Syngap, Remember the Girls, Blount’s Disease Strong, RareKC, The CARES Foundation, CordS Registry, Rare Funding Team, ENACH Asociacion, Teddington Trust, The PKD Foundation, Rare and Undiagnosed Network, and more. There will also be a special Rare Fair virtual blood drive for The Red Cross. Check www.therarefair.com for additional details.
Media partners include CheckRare, DNAPodcast, and Rare Revolution Magazine.
For more information and to register for The Rare Fair, visit therarefair.com.
About My City Med
Guided by the mission to connect patients and caregivers with the resources they need to manage a diagnosis, My City Med is the only online medical provider site searchable by diagnosis, city, or specialty. Since 2015, My City Med has worked to build disease networks that bring the best resources for every diagnosis to patients and caregivers, no matter where they live.
For more information visit www.mycitymed.com. Join the #RareDisease conversation! Follow @MyCityMed on social media.
About Retrophin
Retrophin is a biopharmaceutical company with the mission to identify, develop and deliver life-changing therapies to people living with rare diseases. This is what we do every day in our jobs by working hard, supporting our team members and living our values: Accountability, Entrepreneurial Spirit, Integrity, Patient Focus, Scientific Excellence and Teamwork. We strive to help our organization succeed by pursuing our vision – to become a preeminent, global and fully-integrated biopharmaceutical company within the rare disease community that is dedicated to giving patients a chance and providing hope.
For more information about Retrophin, visit www.retrophin.com.
Media Contact
My City Med edenlord@mycitymed.com http://www.mycitymed.com
