July 26, 2021

PA Rare Disease Leader Profile: Aviva Rosenberg of Gaucher Community Alliance

This is the second in a series of profiles of leaders of rare disease organizations based in Pennsylvania. 

  1. Full Name: Aviva Rosenberg
  1. Current Hometown: Pittsburgh, PA
  1. Name of the Organization: Gaucher Community Alliance
  1. Mission of the Organization: GCA’s mission is to support patients with Gaucher disease and their families through peer-to-peer support and education, advocacy, patient and family resources, and networking. Through mutual self-help and peer-to-peer connections, the GCA wants to ensure that no families shall face this disease alone. GCA is run by a dedicated group of patient volunteers that desire to work with industry to advocate for the patient community and ensure that patients have support with the ever-changing struggles and needs facing this rare disease community.
  1. Rare Disease(s) Covered by the Organization: Gaucher disease Types 1, 2 and 3
  1. Your Role at the Organization: Co-Founder and Co-President
  1. How You Got Involved with the Organization: As a practicing health care attorney for over 20 years, I have unique insight into the extremely complex US healthcare system. As both a patient and a parent of a child with Gaucher disease, I wanted to share with the greater community advocacy skills that I have learned along the way. The established Gaucher organization is focused more on screening and financial assistance for only one type of the disease. I believed that our community needed more in the way of education, peer-to-peer support, and guidance on navigating day-to-day aspects of life living with a rare disease. Along with another patient, Cyndi Frank, who has years of advocacy experience, we founded the Gaucher Community Alliance in 2019.
  1. What You Are Most Proud of or What You Are Excited About Doing Next: For Gaucher awareness month, October 2021, we are producing a video called “This is Gaucher.” This is Gaucher is a video campaign to raise awareness of Gaucher disease that highlights the different types of Gaucher and the many faces, ages, ethnicities, languages, and cultures of people it affects. The campaign’s primary purpose is to raise awareness of Gaucher disease in the medical, general, and patient communities so it can help patients and providers recognize symptoms and aid in a faster diagnosis. This will also provide an opportunity for patients to feel recognized and connect with a campaign that empowers them to be part of a larger community and become their own best advocate. When patients and families recognize they are not alone with this disease and there are services that can help, it is their first step to empowerment. The campaign will also raise awareness of the Gaucher Community Alliance as a premier and credible patient organization in North America.  We have celebrity appearances and will be releasing the premier on October 1st, International Gaucher Day. 
  1. What You Find Most Rewarding in Your Role: Having people trust me with their stories.
  1. What You Find Most Challenging in Your Role: Not being able to raise the funding we need to provide the programs we want.
  1. Resources You Recommend to Other Rare Disease Advocates: National Organization for Rare Disorders (NORD), Global Genes, EveryLife Foundation for Rare Diseases and Aimed Alliance
  1. Any Advice You’d Like to Share with the Rare Disease Community in PA: You have a hidden skill that can help others. Using patients and family members to educate enhances both awareness and empowerment.
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