Interested in presenting at the 2021 NORD Living Rare Living Stronger Patient and Family Forum? Sessions at the forum include plenary, breakout workshops, wellness sessions, and discussion groups. While all sessions are available to all attendee’s, breakout workshops are structured with a particular audience in mind while plenary sessions are for a broader audience. Opportunities to present are available for the following:
Plenary and Wellness: These sessions are designed to inspire and empower with real stories of patient and doctor collaboration, true stories of overcoming hardships and opportunities to relax and unwind.
Breakout Workshops:
Discussion Groups: In 2020 we offered 9 different topics for our audience to engage with like minded peers. Topics included Newly Diagnosed, Teens and Preteens, Young Adults, Parent and Non-Parent caregiving and Dating Divorce and Intimate Partner Relationships. Topic leaders will lead discussions and provide a safe open forum for all attendees to share their thoughts.
Speaker application coming soon…
 Christopher Anselmo Market Intelligence Manager Muscular Dystrophy Association |  Deborah Ayres President Avalon Foundation |  Kelly Barendt Patient |
 Maria Bellefeuille Illinois Volunteer State Ambassador; Rare Action Network NORD |  Kathleen Bogart, PhD Assoc. Professor and Director of the Disability and Social Interaction Lab Oregon State University |  Philip John Brooks, PhD Program Director Office of Rare Diseases Research National Center for Advancing Translational Sciences NIH |
 Colleen Brunetti, M.Ed., C.H.C. Patient Advocate, Author |  Michelle Campbell, PhD Clinical Analyst Stakeholder Engagement and Clinical Outcomes FDA, Center for Drug Evaluation and Research |  Micheal Chappell Caregiver |
 Julie Corder, RN, MSN, CNP Nurse Practitioner Pediatric Complex Care Cleveland Clinic |  Meghan Debenedictis, MS, CGC, MEd Licensed, Certified Genetic Counselor Cole Eye Institute, Cleveland Clinic |  Rishi Desai, MD, MPH Chief Medical Officer Osmosis |
 Rasheera Dopson Blogger, Beauty with a Twist and CEO The Dopson Foundation |  Katie Dykman Social Worker Huntington's Disease Society of America Center of Excellence at Cleveland Clinic |  David Fajgenbaum, MD, MBA, MSc, FCPP Co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN), Assistant Professor of Medicine in Translational Medicine & Human Genetics at the University of Pennsylvania, and Associate Director, Patient Impact for the Penn Orphan Disease Center |
 Raenette Franco Founder & CEO Compassion Works Medical |  Amber Freed Co-Founder & CEO Milestones for Maxwell & SLC6A1 Connect, Caregiver |  Keisha Greaves Owner/Founder Girls Chronically Rock |
 Nicolas Hancart Public Affairs Manager-STABLE Ohio Treasurer of State |  Shannah Hudson Founder & President , Caregiver Mississippi Metabolics Foundation |  Carly Khan, PhD, RN, MPH Program Officer Patient Centered Outcomes Research Institute (PCORI) |
 Orah Lasko Caregiver, Fundraising Chair Foundation for USP7-Related Diseases |  Andrew MacDowell Co Founder and Chief Operating Officer Offscrip |  Kim l. McBride, MD, MS -Investigator, Center for Cardiovascular and Pulmonary Research, The Research Institute, Nationwide Children’s Hospital: Assistant Professor, Department of Pediatrics, The Ohio State University College of Medicine |
 Mary McGowan Executive Director The Myositis Association |  Beth McKenna Caregiver, Fundraiser and Advocate Childrens Tumor Foundation |  Nicholas Meyering Board Member Congenital Central Hypoventilation Syndrome Network |
 Marvin Natowicz, MD, PhD Professor of Pathology, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University; Physician at Cleveland Clinic |  Effie Parks Caregiver, Host Once Upon a Gene |  Amye Phinazee Patient |
 Mike Porath Founder & CEO The Mighty |  Tejashri Purohit-Sheth, M.D., FACAAI, CQIA, CAPT, USPHS Director, Division of Clinical Evaluation and Pharmacology/Toxicology, Office of Tissue and Advanced Therapies, Center for Biologics Evaluation and Research U.S. Food & Drug Administration |  Kam Redlawsk Industrial Designer, Illustrator, Writer and Disability Advocate |
 Seth Rotberg Co- Founder, Head of Strategy & Engagement Our Odyssey |  Tracy Shaw Caregiver Maddie's Herd |  Darlene Shelton President, Founder Danny's Dose Alliance |
 Samantha Smith President Gastoparesis Patient Association for Cures and Treatments, Inc. |  Linda Hampton Starnes Parent Florida Family Leaders Network |  Mac Starnes Self-Advocate Florida Family Leaders Network |
 Jennelle Stephenson Patient |  John Tisdale, MD MD Senior Investigator, Molecular and Clinical Hematology Branch NIH/NHLBI |  Teonna Woolford Patient Advocate Sickle Cell Community Consortium |
 Matthew Zachary Founder and CEO Offscrip and Founder, Stupid Cancer |
