The Grace Science Foundation's
NGLY1 FAMILY COMMUNITY
We have strength in numbers.
A rare disease diagnosis can be isolating, but you are not alone. We have created an NGLY1 family community to connect you with other families that share similar experiences. Here you can share personal stories, exciting milestones, scientific research, and hardships in a supportive space.
We are connected to 120+ children diagnosed with NGLY1 Deficiency around the globe. Our family community spans over 7 continents, 30 countries, 20 languages, and 110 families. Everyone is welcome.
Our family community has allowed the Grace Science Foundation to conduct research and push our mission to develop an understanding of the disease and to find a cure for NGLY1 Deficiency.
UNITED BY RARITY, BOUND BY HOPE.
Showing up for each other...
Below are examples of how we stay connected. If you are an NGLY1 patient family, reach out to info@gracescience.org or click the links below to get started.
NGLY1 Family
Facebook Group
A group for NGLY1 families only. This is a safe space to share exciting milestones, ask for advice, and voice concerns.
NGLY1 Family
Zoom Meetings
Connect face-to-face with other NGLY1 families and the Grace Science team. Discuss topics and hear from medical specialists.
NGLY1 Family
Google Group
Recieve updated from the Grace Science Foundation for NGLY1 families. Access the latest Grace Science news and research in NGLY1 Deficiency.
NGLY1 Family
Conference
Meet in-person with the opportunity to watch rare disease talks and ground breaking research presentations from NGLY1 scientists.