Health Union Launches RareDisease.Net, a Unique Community for People Living with Rare Conditions
Company’s newest online health community will feature virtual events to provide opportunities for people with rare conditions to connect
Published November 17th, 2022 | 4 Minute Read
PHILADELPHIA — November 17, 2022 — Health Union, the leader in social health, announces the launch of RareDisease.net, an online health community designed to help people with a wide range of rare conditions find the information, connection and support they need. RareDisease.net fills an unmet need by providing a safe, supportive environment for people to connect in the shared experience of living with a rare condition.
RareDisease.net, the company’s 41st online health community, represents the next evolution of Health Union’s successful online health community model, which focuses on adaptive engagement, patient-written content and moderated social conversations. Health Union’s proven approach to online health communities leads to positive outcomes for people living with chronic conditions, and RareDisease.net expands this experience to people who might not have access to similar resources due to the rarity of their individual conditions.
A rare disease is defined in the United States by the Orphan Drug Act as a condition that affects less than 200,000 people nationally, and the National Institutes of Health report that about 30 million people in the U.S. have a rare condition. RareDisease.net is designed to cater to the unique needs and topics of interest of the universal rare disease community, including the diagnostic journey, the role of genetics and treatment concerns. The aim is for anybody living with one of thousands of rare conditions to connect with others in the shared experience of living with a rare condition and find information relevant to their health journeys.
“Growing up, I didn’t know anyone outside of my family with my same rare diseases, or even anyone else with a rare disease in general,” said Jenny Jones, RareDisease.net patient leader living with familial adenomatous polyposis and short bowel syndrome. “It was extremely isolating and negatively impacted my mental health. The ability to access a community to connect with others who have similar experiences as yourself, especially if they have the same rare disease, has been life-changing for me.”
Similar to Health Union’s other online health communities, participants can read relatable content, including personal – often emotional – articles written by patient leaders living with various rare conditions. People impacted by rare conditions can also submit stories and engage with each other on the website and associated social channels, specifically Facebook, Twitter and Instagram.
Unique to RareDisease.net, the community will feature various virtual events designed to provide education and create meaningful connections among patients and caregivers, as well as healthcare providers. Another addition is a searchable database of more than 5,000 known rare conditions, linked from rare disease portal Orpha.net, that features valuable information, including prevalence and typical age of onset.
In addition to offering social health opportunities for people with a wide range of rare diseases, RareDisease.net will also be accessible to those who already participate in some of Health Union’s standalone communities for rare conditions. These existing communities are Cystic-Fibrosis.com, HSDisease.com (hidradenitis suppurativa), Myasthenia-Gravis.com, Neuromyelitis-Optica.net, Sickle-Cell.com, Narcolepsy.Sleep-Disorders.net, SpinalMuscularAtrophy.net and ThyroidEyeDisease.net. People living with rare types of cancers, such as those with myeloproliferative neoplasms who engage with Blood-Cancer.com, can also find a home on RareDisease.net.
“For more than a decade, Health Union’s online health communities have proven to be an impactful and useful resource in the overall experience of people living with chronic health conditions and helping them achieve better health outcomes,” said Amrita Bhowmick, Health Union’s chief community officer. “Launching RareDisease.net is an exciting next step in connecting people in meaningful ways through the shared experience of living with chronic and complex health conditions.”
In addition to being a useful and welcome resource for people living with rare conditions, RareDisease.net will have a mutually beneficial impact on the healthcare industry, providing insight into the patient and caregiver journeys, challenges of daily life and the evolving needs of the community.
About Health Union
Health Union is the proven industry leader driving and amplifying social health. As the premier social health company, only Health Union encourages the dynamic, real-time action people take to find meaningful connections and share information that impact their health journey. The company reaches millions of people through the largest portfolio of condition-specific online health communities (e.g., Migraine.com, MultipleSclerosis.net, LungCancer.net) and health leaders – addressing virtually every condition and providing the information, connection and support they need.