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
Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10
Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10
As A Rare Disease Patient or Parent Advocate, we know that so often you’ve felt an overwhelming frustration with the
Approximately 80 percent of the close to 7,000 rare diseases are caused by genetic changes. Although many people may value
Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting
Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting
A Guide to Working With Your Genetic Counselor Since most rare diseases are caused by changes in your genes,
This personal story is shared through the eyes of Jessica Fein, rare disease caregiver and MERRF advocate. She shares their
This personal story is shared through the eyes of Melissa Hayden, a rare patient and her journey working with her
The recruitment of patients for rare disease clinical trials can be challenging because of issues such as small patient populations
The BasicsName: Karen Durrant RN, BSN Title: President/Founder of the Autoinflammatory Alliance Organization: Autoinflammatory Alliance Social Media Links: Disease focus: