Diana Jussila

Diana Jussila Email and Phone Number

Director Of Family Services at National Tay-Sachs & Allied Diseases Association @ National Tay-Sachs & Allied Diseases Association
Warwick, RI, US
Diana Jussila's Location
Warwick, Rhode Island, United States, United States
About Diana Jussila

I've been with NTSAD since 1995 and have had the privilege to watch the rare disease landscape evolve over the last 27 years. While I've held every position in the organization, my current work is near and dear to my heart. I work closely with families and adults affected by rare genetic diseases by developing and offering resources, support and guidance as they navigate the challenging world of rare diseases. On the flip side, in early 2021, I began to work with my industry counterparts serving as a liaison between families, NTSAD and the companies with drug development programs focused on Tay-Sachs, Canavan, GM1 and Sandhoff diseases. Listening to and representing the family voice is paramount. Collaborating with fellow patient advocacy organizations, researchers, my colleagues and families is exceptionally gratifying, including projects ranging from educational materials, consortiums, and conferences to FDA interactions including the GM2 Externally led Patient-led Drug Development Meeting, the GM2 Voice of the Patient Report and Patient-led Listening Sessions for Late Onset GM2 and Canavan. The rare disease community inspires me every day and I look forward to the day when treatments are a reality for families faced with these diagnoses.

Diana Jussila's Current Company Details
National Tay-Sachs & Allied Diseases Association

National Tay-Sachs & Allied Diseases Association

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Director Of Family Services at National Tay-Sachs & Allied Diseases Association
Warwick, RI, US
Diana Jussila Work Experience Details
  • National Tay-Sachs & Allied Diseases Association
    National Tay-Sachs & Allied Diseases Association
    Warwick, Ri, Us
  • National Tay-Sachs & Allied Diseases Association
    Director Of Family Services
    National Tay-Sachs & Allied Diseases Association Aug 2014 - Present
    Greater Boston Area
    - Offer families support and resources, including siblings, grandparents, and extended family as needed. - Support carrier couples by providing family planning resources to them and connecting them with those resources and address carrier screening inquiries and requests for insurance support letters which requires basic knowledge of carrier screening and resources available- Produce and publish Lifeline, NTSAD’s family newsletter - online and print editions, use social media for outreach, action alerts, sharing information, and getting updates about families. - Develop fundraising goals and plans for family-driven fundraising events while working with Executive Director, Director of Development, and others to organize and implement a communications and development plan throughout the year, with responsibility for executing specific development and communications activities. -Outline, draft, and write communications, using social media and Constant Contact to communicate with a community of Peer Support Group members, donors, and other NTSAD friends.- Work with Director of Development to develop target appeals (print and electronic) to appropriate audiences, including both current and prospective donors. Write content and produce appeal print and electronic materials.

Frequently Asked Questions about Diana Jussila

What company does Diana Jussila work for?

Diana Jussila works for National Tay-Sachs & Allied Diseases Association

What is Diana Jussila's role at the current company?

Diana Jussila's current role is Director Of Family Services at National Tay-Sachs & Allied Diseases Association.

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