Rare New England is asking Massachusetts constituents to contact their state legislators and ask them to cosponsor “An Act To Create a Massachusetts Advisory Council”.
Patients and families living with rare diseases face many challenges, including finding accessible medical care, affording available treatments, obtaining appropriate educational opportunities, and having basic needs met in everyday life.
There is a severe deficit of awareness regarding rare diseases and their implications throughout the country, and within the Commonwealth, creating negative ramifications on rare disease patients and those caring for them. Not only is the rare disease community severely burdened by this lack of awareness and support, but often this results in harm or even death to patients.
This bill if enacted will enable a group of expert stakeholders from the rare disease community, including geneticists, genetic counselors, legislators, patients, caregivers, patient advocacy groups, school representatives, hospital administrations, industry, and more, to gather and share perspectives, and discuss opportunities to find solutions to increase quality of lives for all affected by rare disorders.