Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
What Makes a Rare Disease Patient Advocate?Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our...reactions2comments
What Is Power Posing?Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide...reactionscomments
Gene Therapy for HemophiliaFor more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare...reactionscomments
My Mental Health DiscoveriesContent Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my...reactionscomments
Coping with Grief During the Holiday SeasonEditor’s Note: This article was originally shared by our sister site, H-I-V-.net, and was written by Khafre Kujichagulia Abif. I can remember...reactions4comments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health...reactionscomments
How to Navigate Online Doctor RatingsEditor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how...reactions2comments
Community Spotlight: Bleeding Disorders That Aren't HemophiliaInherited hemophilia is not the only type of bleeding disorder. Other bleeding disorders can appear similar to hemophilia but involve different abnormalities...reactionscomments
Finding a TherapistI’m a fan of therapy, but to be honest, I personally haven’t always found it to be helpful in the past. Perhaps...reactionscomments
Voting with a Rare DiseaseVoting is a fundamental American right, but it has special meaning for people with disabilities or health conditions. Until federal laws like...reactionscomments
Clinical Trial ParticipationClinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of...reactionscomments
Clinical Trial GlossaryClinical trials or studies have a language of their own. It helps to understand the common terms doctors use when talking about...reactionscomments
Understanding Clinical TrialsA clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why...reactionscomments
ICD Codes: Why They Matter in Rare DiseaseThe International Statistical Classification of Diseases and Related Health Problems (ICD) is used worldwide to standardize the classification of diseases. It is...reactionscomments
What Is Gene Therapy?Genes are the pieces of DNA that make us who we are. They determine our eye and hair color, how tall we...reactionscomments
Community Spotlight: Glycogen Storage DiseasesGlucose is an important sugar that bodies need for energy. The body packs small molecules of glucose into large molecules called glycogen...reactionscomments
