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Our Community in 2020

Countless rare disease patients, caregivers, and medical professionals from our community have reached out to us, many of whom are overwhelmed and struggling to cope with the impacts of COVID-19. Financial hardship, the burdens of lockdowns, and many healthcare concerns have contributed to a level of stress we simply haven't seen before.

The RDF Webcast: Offering Support, Bringing Us Together 

Everyone has questions, and we want to help find answers. That's what this webcast series is about: bringing together patients, family members, medical professionals, healthcare experts, and researchers. Together, we can identify and even answer questions we couldn't tackle alone. 

The First Episode of our webcast series is "COVID-19 and the Challenges of Going Back to School"

Alana Newton

Alana is intimately familiar with the experience of living with a rare disease as both she and her son have Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. With a background in nursing, Alana is currently a clinical counsellor working with adults with chronic complex health conditions. 
Alana is also a RDF board director and the mental health program lead. She is passionate about increasing awareness about rare diseases and providing psychosocial and emotional support to the rare disease community.

Eric Schofield
Eric lives on Vancouver Island in Brentwood Bay, BC with his wife Krystle and two daughters Liliane and Alina. Alina, who is 4 years old, lives with a rare association called VACTERL. Eric is a Culinary Arts teacher at Stelly's secondary school in the Saanich school district.

Outside of work, Eric loves being active and enjoys canoeing, hiking, cycling, and playing basketball. But most of all, he uses his energy to play with his daughters in the forests, lakes and beaches near their home. His passions include learning about food, science, and parenting. Eric has been involved with the Rare Disease Foundation since the summer of 2016, when his daughter Alina was still living in the NICU in Vancouver.