About Global genes
Global Genes: Empowering Rare Disease Communities
Global Genes is a non-profit organization that is dedicated to empowering rare disease communities by providing them with the necessary information, resources, and connections. The organization was founded in 2008 by Nicole Boice, a mother who lost her daughter to a rare disease called cystic fibrosis. Since then, Global Genes has been working tirelessly to raise awareness about rare diseases and provide support to those affected by them.
Rare diseases are defined as conditions that affect fewer than 200,000 people in the United States. There are over 7,000 known rare diseases affecting an estimated 400 million people worldwide. Despite their prevalence, many of these conditions remain poorly understood and lack effective treatments. Patients with rare diseases often face significant challenges in obtaining accurate diagnoses and accessing appropriate care.
This is where Global Genes comes in. The organization's mission is to eliminate the challenges of living with a rare disease by providing patients and their families with access to information about their condition, connecting them with other patients and advocacy groups for support, and advocating for policies that improve research funding and patient access to treatments.
One of the key ways that Global Genes supports the rare disease community is through its Rare Disease Patient Impact Grant program. This program provides funding for patient advocacy organizations around the world who are working on projects aimed at improving diagnosis rates or developing new treatments for specific rare diseases.
In addition to its grant program, Global Genes also hosts an annual RARE Patient Advocacy Summit which brings together patients, advocates, industry leaders, researchers and policymakers from around the world for three days of learning opportunities focused on advancing global efforts towards diagnosing treating curing all forms of genetic disorders.
Another important initiative led by Global Genes is its RARE Toolkits series which provides practical resources designed specifically for patients living with specific types of genetic disorders such as Alport Syndrome or Ehlers-Danlos Syndrome (EDS). These toolkits include information on diagnosis criteria treatment options clinical trials research updates tips on how best manage symptoms along with other helpful resources like financial assistance programs available through various foundations or government agencies.
Global Gene's commitment towards empowering individuals affected by genetic disorders extends beyond just providing educational materials but also includes creating opportunities where they can connect share experiences learn from one another while building supportive networks within their respective communities via social media platforms like Facebook Twitter Instagram LinkedIn YouTube etc..
The organization has also developed partnerships across multiple sectors including academia industry government agencies healthcare providers insurance companies philanthropic organizations etc.. These collaborations have helped advance research efforts into understanding more about these complex conditions while simultaneously increasing public awareness about this often overlooked population group whose needs require special attention due rarity complexity associated managing such illnesses effectively over time without proper guidance support systems place can lead significant negative impacts quality life both individual family members alike.
In conclusion,
Global Genes' work has been instrumental in raising awareness about rare diseases globally while supporting those affected through education advocacy initiatives aimed at improving diagnosis rates treatment options overall quality life individuals families impacted these complex medical conditions.
Their dedication towards empowering individuals living genetic disorders underscores importance collaboration between different stakeholders involved addressing needs this vulnerable population group.
Through continued efforts partnerships across multiple sectors we can hope see greater progress made towards finding cures better management strategies ultimately improving outcomes millions worldwide suffering from various forms inherited illnesses today tomorrow future generations come!
globalgenes.org
