@unitedporphyrias

unitedporphyrias has been a member of Linktree for 4 years and joined in January 2022. The social media accounts linked to from unitedporphyrias are: Facebook, Instagram, LinkedIn, Email, Payment, X. Besides social media accounts, unitedporphyrias has populated their site with Nutrición y Estilo de Vida en Porfiria, Get your Purple for Porphyria Ribbon, Meet Dr. Karl Anderson, Porphyriapalooza! Learn more and register!, Porphyria ConnectUP Small Group Meetings, Patient Care Tool: EPP & XLP, Donate for Giving Tuesday, Latest eNews!, The unseen battles: Advocating for mental health in the porphyrias, Meet Ariel Lager, UPA Board of Directors, What's UP Doc? Menopause and porphyria, INSPIRE MT-7117 Phase 3 Study, EPP and XLP Youth Survey Interest, Summing UP: The EPP Impact Questionnaire (EPIQ), EPP/XLP Diagnosis and Treatment Recommendations, Recording Q&A with Dr. Dickey on May 11, Meet Craig Leppert, Shadow Jumpers Founder, Summing UP: Power Study for Acute Hepatic Porphryias, Topline results for Bitopertin phase 2 clinical tria', Cutaneous Porphyrias Bonus Questions, Acute Porphyrias Bonus Questions, Meet Dr. Manisha Balwani, Summing UP: EPP/XLP Consensus Guidelines, Participate the longitudinal porphyrias study, Understanding My Diagnosis, What's UP Doc? Acute porphyria and kidney health, Study Information- Medication Safety for Acute Hepatic Porphyrias, Meet Colin, Porphyria Advocate, How is Porphyria Diagnosed?, Learn about the different types of porphyria, Get Involved in Rare Disease Day!, Jennifer's EPP Story- NIH Rare Disease Day 2023, Rare Disease Day 2024, Joe Crowley, UPA Director and Former Congressman, Recording: What's UP Doc Live with Dr. Wang, For Caregivers- Resource Hub, Meet Kristen Wheeden, UPA President, Hope in Action Colu, Resource- Porphyrias Overview, Acute Porphyrias- Impact on Quality of Life, EPP/XLP Gene Modifier Study Interest Form, Porphyria Together Private Facebook Group, How to prepare for knee surgery with a rare porphyria, Join UPA's Mailing List, Understanding Cutaneous Porphyrias, On Rare Podcast- Jay's EPP Story, Meet Dr. Herbert Bonkovsky, Patient Day Recording: EPP & XLP Guidelines, Summing UP: Acute hepatic porphyria and anaesthesia, Pain in acute hepatic porphyrias, UPA Porphyria Playlist, Meet Padmini Pillai, What's UP Doc? Surgery precautions and cutaneous porphyrias, Patient Day Recording: Power Study Findings, Summing UP- Maternal and fetal outcomes in acute hepatic porphyria, What's UP Doc? Acute porphyria and liver tests, Meet Dr. Manish Thapar, Summing UP: EPP/XLP Liver Guidelines, Podcast: Brady is living with EPP, Summing UP- EPP Symptoms and Light Sensitivity, Hope in Action: Latest Column, Learn more about your porphyria!, Summing UP: Pain in acute hepatic porphyrias, Recording- Bitopertin UPdate with Dr. Bonkovsky, About EPP and XLP, Join our mailing list!, Summing UP: Givosiran and Acute Porphyrias, Latest Porphyria eNews, Join the United Porphyrias Association Discord Server!, Patient Day- October 29, Early bitopertinn trial results, Research: EPP on the Mental Health of Children in the US, Introducing #MyPorphyria, Understanding Porphyrias Downloadable Resource, Camp Discovery for kids, Shadow Jumpers, Shadow Jumpers – EPP Comic Book, Dersimelagon in Erythropoietic Protoporphyrias - PubMed, Watch Video: Jennifer's EPP Story at NIH Rare Disease Day 2023, What's Up, Doc? Protecting Your Kidneys, Sign Up for ConnectUP: Small Porphyria Group Meetings, New Research: PCT resolves with Hep C treatment, Recording: What's UP Doc? Live with Dr. Wang on Feb 18, Important update in EPP/XLP disease management, Sign Up, Patient Worthy, What's UP, Doc?, Porphyria News-Hope in Action, Amalia's Story, Donate.