GLOBAL GENES™ Launches “RARE Toolkits” as Premier Educational Resource for the Rare Disease Community
Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10
GLOBAL GENES™ Launches “RARE Toolkits” as Premier Educational Resource for the Rare Disease Community
Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10
Five Rare Disease Toolkits Every Patient and Parent Should Read
As A Rare Disease Patient or Parent Advocate, we know that so often you’ve felt an overwhelming frustration with the
Mini Toolkits Based on Popular 2015 RARE Webinars Launch
Approximately 80 percent of the close to 7,000 rare diseases are caused by genetic changes. Although many people may value
New Educational Toolkits from Global Genes Demystify Rare Community’s Biggest Problems
Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting
New Educational Toolkits from Global Genes Demystify Rare Community’s Biggest Problems
Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting
Questions to Ask Your Genetic Counselor for Rare Disease
A Guide to Working With Your Genetic Counselor Since most rare diseases are caused by changes in your genes,
The Steps After a Rare Diagnosis — What To Do Next
This personal story is shared through the eyes of Jessica Fein, rare disease caregiver and MERRF advocate. She shares their
How a Genetic Counselor Can Help You — Told by a Rare Patient
This personal story is shared through the eyes of Melissa Hayden, a rare patient and her journey working with her
Putting the Patient at the Center of Rare Disease Clinical Trials
The recruitment of patients for rare disease clinical trials can be challenging because of issues such as small patient populations
Rare Leader: Karen Durrant, President, Autoinflammatory Alliance
The BasicsName: Karen Durrant RN, BSN Title: President/Founder of the Autoinflammatory Alliance Organization: Autoinflammatory Alliance Social Media Links: Disease focus:
