My Nonprofit Reviews

S_D_Fischer - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

S_D_Fischer

52 profile views
2 reviews

Review for Global Genes®, Aliso Viejo, CA, USA

Rating: 5 stars  

Global Genes offers amazing resources to rare disease patients, families and other advocates at no cost. These include webinars and toolkits that have been carefully compiled with input from experts within the rare community on timely and relevant topics such as Navigating Health Insurance, Building a Care Notebook, Starting a Non-Profit and Parenting A Child with Life-Limiting Illness. They are very collaborative, partnering with other organizations such as the EveryLife Foundation for Rare Diseases to host RARE on the Road events across the country as well as the National Alliance for Caregiving to better understand the challenges faced by those who act as caregivers to children and adults with rare diseases. I highly recommend Global Genes as a resource to others in the rare community on a regular basis.

Role:  Client Served
 

Review for Global Genes®, Aliso Viejo, CA, USA

Rating: 5 stars  

Global Genes has done a wonderful job of bringing together rare disease patients and caregivers to share experiences and resources. They help unify the rare disease community to raise awareness of rare diseases (which collectively affect one in ten Americans) and advocate for beneficial public policy.

Global Genes identifies what resources would be most helpful for patients and patient advocacy organizations and then creates them, making them available free of charge to anyone who could benefit from them. A great example would be the toolkits which tackle tough issues such as how to help a child with rare disease transition into adulthood.

RARE Daily, the blog of Global Genes, provides a platform for rare disease patients and advocates to raise awareness of a specific rare disease, share an experience which could be insightful to another patient, and discuss the importance of public policy at a state and local level.

The staff of Global Genes is warm and caring, and makes each of us feel important. Having a rare disease can be isolating, but Global Genes helps me make connections to other patients and fosters a true sense of community.

As a rare disease patient and a donor to Global Genes, I find it to be a unique organization that really makes a difference.

Role:  Donor