Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Job Postings

Executive Director

Click Here to Apply. 

National Tay-Sachs & Allied Diseases Association (NTSAD) is looking to hire a passionate, experienced, and inspiring Executive Director to lead the organization in this unprecedented time of progress and hope. The landscape for the patient community is rapidly evolving with increased and promising drug development activity. NTSAD’s next Executive Director will have the opportunity to navigate this exciting chapter, as clinical trials are underway for the first time, providing the tremendous potential to modify the course of these life-threatening and debilitating diseases.

About NTSAD: Founded in 1957, NTSAD was one of the first patient advocacy organizations in the USA and has played a pivotal role in reducing incidence of Tay-Sachs, Canavan, GM1, and Sandhoff diseases in at-risk populations. Supporting families is at the center of its mission. NTSAD leads the worldwide fight to treat and cure these rare diseases by driving research, building community for all affected families, and providing families with resources and expertise to help them navigate a rapidly evolving clinical landscape. NTSAD’s work has contributed to carrier screening science, community education, laboratory quality control programs, and rigorous community carrier screening. It continues to support patients and affected families in profoundly important ways and represents their voice in the science, research, and drug development process. The NTSAD office is located in Boston, MA. It is staffed by a talented and versatile internal team of five employees. Its 20-member board of directors is national, collaborative, and diverse and is comprised of families from the rare disease community and professionals from the biotechnology industry. The annual operating budget of approximately $1M is supported by net assets of $2M. NTSAD has a strong cash position and healthy fundraising strategy. To learn more about NTSAD: https://www.ntsad.org/

The Opportunity Going Forward: The Executive Director will have overall strategic and operational responsibility for NTSAD’s staff, programs, expansion, and execution of its mission. As the organization begins its new chapter, this Executive Director will embrace this multifaceted role and further define the vision and growth opportunities for NTSAD, leveraging the recently completed 5-year strategic plan. This is a meaningful time for NTSAD. Notable opportunities and expectations for this position are to:

• Provide enthusiastic leadership, inspiration, strategic direction, and vision for the organization and its strong staff; further define and develop the new Research Director staff position.

• Help the organization navigate the new frontier of drug development, continually understanding and anticipating the needs of patients and affected families and representing their voice with the rare disease research and academic communities

• Engage with families, funders, industry and other stakeholders to strengthen existing relationships and develop new relationships to further the mission

• Maintain and expand connections to leading groups in the rare disease community and identify and pursue opportunities to maintain and elevate NTSAD as a rare disease community leader

• Collaboratively enhance the fundraising strategy to increase existing sources and establish new sources of revenue and funding for NTSAD

• Initiate, maintain, and adapt programs (family support, conferences, research) to ensure excellence aligned with the strategic plan and changing environment

• Assess and define an organizational infrastructure that leverages staff talent and efficiencyThe Ideal Candidate While no one candidate will possess every quality outlined for this position, successful applicants will bring many of the following professional qualifications and personal attributes:

• Passion for and experience in rare diseases preferred; scientific acumen

• Experience crafting strategy for a mission-focused, growth-oriented organization

• Skilled at communicating, building rapport, and navigating across stakeholder groups, such as patients, families, industry, non-profits, academic institutions, government groups, and funding agencies

• Emotionally intelligent, a good listener, and has empathy for the challenges faced by people served by the organization

• Track record of successful fundraising • Proven understanding of the operational needs of a nonprofit or similar enterprise, including fiscal experience

• People management experience inclusive of developing, leading, and inspiring teams and leveraging individuals’ strengths to meet goals

• Ability to set priorities decisively, delegate responsibilities, assure accountability and allocate resources to ensure results

• BS/BA degree required with an advance degree preferred, and seven plus years of for-profit or nonprofit leadership experience

• The Board prefers Boston/Northeast-based leadership yet is open to a remote work arrangement

Application Guidelines: Candidates must include a resume and a cover letter that describes how their qualifications and experience match the needs and mission of NTSAD, along with salary requirements. Applications will be accepted until the position has been filled. Send required documents to: https://eostransitions.applicantpool.com/jobs/ Salary is commensurate with experience and within the framework of the organization’s annual operating budget.

EEOC Statement: NTSADs believes in a diverse environment and is committed to equal employment opportunity. We do not discriminate in recruitment, hiring, any other employment practices for reasons of race, color, gender, religion, national origin, gender identity, age, sexual orientation, marital or veteran status, disability, or any other legally protected status.

This executive search is being conducted by Eos Transition Partners consultant Nancy Jackson. All submissions will be acknowledged and are confidential, and any questions must be submitted to Nancy Jackson at: This email address is being protected from spambots. You need JavaScript enabled to view it..

Research Director, National Tay-Sachs & Allied Diseases Association (NTSAD) 

Location: NTSAD is based in Boston MA, but this position could be remote

Click Here to Apply. 

Description of NTSAD: National Tay‐Sachs & Allied Diseases Association (NTSAD), a family‐focused patient advocacy organization, supports individuals and families affected by rare neurodegenerative genetic diseases.  NTSAD’s mission is to “lead the worldwide fight to treat and cure Tay‐Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.” This is a unique time in NTSAD’s history as we have just completed a new five‐year strategic plan outlining plans for growth as clinical trials begin for the first time ever for our diseases. 

Position Overview: NTSAD is looking to hire a highly motivated and passionate individual to be our Research Director to engage with key stakeholders regarding the discovery and development of treatments and technologies to impact patients affected by Tay‐Sachs, Canavan, GM1 gangliosidosis and Sandhoff diseases. The individual hired will engage with academic researchers, clinicians, pharma and biotech companies, other patient groups, families and regulatory authorities to ensure each group is aligned regarding research advancements and activities impacting drug development and earlier diagnosis. This will be the first research director hired for the organization and as such, presents a unique opportunity to continue to grow NTSAD’s role in supporting and driving research, diagnostic and clinical activities to impact patients.  The successful candidate will have outstanding relationship‐building and communication skills, strong knowledge of drug discovery and drug development, and a passion to make a difference in rare diseases. To learn more about NTSAD: https://ntsad.org/index.php 

Position Responsibilities: This role is multifaceted and will involve engaging in a range of activities to support the mission of NTSAD.  Key responsibilities are outlined below:  

Further develop and manage research and diagnosis programs

  • Implement updated research strategy and initiatives identified through task forces in research, clinical development, newborn screening and early symptomatic diagnosis.
  • Reinvent, implement and manage grant program(s) to provide funding mechanisms to support research efforts at university labs, research institutions and biotech companies.
  • Work with community and relevant experts to advocate for and advance newborn screening for NTSAD diseases.
  • Lead earlier symptomatic diagnosis initiative through raising awareness, physician education, and improving genetic testing.
  • Collaborate with NTSAD’s research and clinical partners to define our disease community’s registry strategy, integrate the registry into overall research agenda, and maximize its value in the drug development process

Engage with Stakeholders regarding development of potential treatments, technologies  and diagnosis programs

  • Working closely with the Executive Director, the Research Director will collaborate with medical research and pharma to develop, maintain, and cultivate relationships with key opinion leaders.
  • Provide access to accurate information on core diseases and clinical research tools to companies considering clinical programs.
  • Convene patient community and key stakeholders to build knowledge and insight into diseases and clinical development that will be used for clinical planning and execution.
  • Update structure, role and manage Science Advisory Committee and Corporate Advisory Council.
  • Engage with regulatory authorities to provide input regarding regulatory considerations.

Monitoring research and clinical landscape 

  • Track relevant scientific literature and advancements.
  • Organize research / science conferences to focus on specific research areas/needs including the research session at the Annual Family Conference. 

Patient and family engagement in partnership with Family Services Director

  • As a scientific expert, engage with patients and staff to provide advice and information regarding scientific and research developments impacting programs in preclinical and clinical development.
  • Help develop resources that families can use to understand research advancements that could impact their specific situations.
  • Communicate research updates to families and other constituencies; engage the patient and family community to continue to understand NTSAD’s research priorities.
  • Support Family Services Director and Coordinator in educating patient community about clinical trials.
  • Update research section content on website to be informative for all audiences.


Position Requirements:

  • Master’s degree or higher in a life sciences discipline preferred; BS/BA degree required.
  • Experience in rare genetic diseases preferred.
  • Relevant experience in drug discovery and/or drug development, ideally in an industry or non‐ profit setting; other relevant experience in an academic environment acceptable. 
  • Familiarity and ease in conversing with scientists and clinicians conducting medical research.
  • Proven track record of building relationships and establishing and advancing collaborations across and within the non‐profit, for‐profit, and academic sectors.
  • Experience engaging with families affected by rare diseases to communicate scientific and clinical updates. 
  • Strong project management and general organizational skills. 
  • Ability to work independently and effectively in a remote setting.
  • Excellent attention to detail, strong written and verbal communication skills.
  • Experience managing research funding and allocating grants preferred.

EEOC Statement: NTSADs believes in a diverse environment and is committed to equal employment opportunity. We do not discriminate in recruitment, hiring, any other employment practices for reasons of race, color, gender, religion, national origin, gender identity, age, sexual orientation, marital or veteran status, disability, or any other legally protected status. 

Click Here to Apply.