Who We Are
WE ARE rare disease patients, mothers, fathers, siblings, caregivers, advocates and activists. WE ARE an organization that cares deeply about creating a community for those living with and affected by rare disease in Vermont and beyond. WE ARE an organization that aims to provide support and resources for this community, as well as break down some of the barriers for people living with rare disease. WE ARE going to make rare disease not so “rare” by raising awareness, having conversations and providing educational opportunities.
WE ARE CONNECTED.
Vermont Rare is a non-profit organization established to support patients, families and caregivers affected by rare disease. Our goal is to be a voice for the rare disease community in Vermont and beyond; to educate and raise awareness about the impacts of living with rare disease on patients, families, caregivers and communities; and to provide financial assistance and support to those affected by rare disease.
The three pillars of Vermont Rare:
Outreach & public speaking → schools, conferences, colleges, medical clinics
Rare Disease Day → annually last day of February
Resources – online library
Help families, patients, caregivers become advocates for themselves
Help families, patients, caregivers with better communication skills with docs, hospitals, schools, alternative options
Be the “voice” of rare in VT/NH → Washington DC → Nationwide
Financial assistance to families through small grants/stipends – attend conferences, glasses, orthotics, alternative therapies, horse back riding lessons, sports equipment, etc…
Yoga and meditation for patients and caregivers
“Go-to” resource for rare disease community