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

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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

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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

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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

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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

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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

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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,

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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

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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

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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

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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:

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Taking Control: Optimizing Your Potential as a Young Adult With a Rare Disease

 

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