Partnering with Industry

Collaborating with Biotechnology and Biopharmaceutical Companies in Drug Development

Leveraging more than 65 years of expertise as a leading patient advocacy organization, NTSAD is an experienced partner in collaborating with biotechnology and biopharmaceutical companies in drug development programs for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. NTSAD brings the voices of affected individuals and families to conversations with companies focused on early-stage to preclinical and clinical trials as potential therapeutic programs are developed. We share the same mission of identifying effective therapies and treatments for the our rare, global community.

There are several ways NTSAD collaborates with industry partners, including:

  • Scheduled monthly touchpoints, updates, and meetings

  • Access to affected individuals and families for focus groups and interviews

  • Patient Advisory Committees/Councils

  • Dissemination of relevant industry communications to the patient community

  • Participation in NTSAD’s Annual Family Conference and Research and Industry presentations

  • Assistance in creation of educational materials about drug development, natural history studies, and clinical trials

  • Community-building opportunities for company and employees through events such as NTSAD’s annual Day of Hope

  • Awareness and recognition via sponsorship and support of NTSAD’s Annual Family Conference, our Family Services programs and materials, and NTSAD’s annual, signature fundraising event – Imagine & Believe

Research Priorities

Read more about NTSAD’s efforts in advancing basic and translational research, clinical development, early diagnosis, and newborn screening.

Industry Roundtable

Each year, NTSAD brings together industry partners to share ideas and optimize engagement between NTSAD and the biotechnology and biopharmaceutical companies with whom they interact.

Read NTSAD’s Industry Partnership Guidelines

For more information on NTSAD’s Industry Roundtable, please contact CEO Kathy Flynn here.