SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.

ISN Volunteer Position Description: Director of Information Technology

If you are interested in applying for any volunteer position with the nonprofit International Scleroderma Network, or if you have further questions about any position or possible openings, please email [email protected]

Title: ISN Director of Information Technology or ISN Chair of Information Technology


Position currently closed

Position Reports To

ISN President

Language Requirements

Candidate must be able to read and write English

International Scleroderma Network (ISN)

The International Scleroderma Network (ISN) is an international nonprofit 501(c)(3) agency founded in MinnesotaWe provide healthcare information and support via our 5,000+ page SCLERO.ORG website in 23 languagesWe publish the Voices of Scleroderma book series, and we support international research efforts for scleroderma

Scleroderma is a rare arthritis/autoimmune disease that is popularly known as the "disease that turns people to stone" because it causes a hardening of the skin, blood vessels and/or internal organs

Position Summary

To develop, direct and oversee all Internet technology activities of the ISN as well as the policies of the organization including preparation of annual and current up-to-date monthly reports of these activities

The individual serving in this capacity must be someone with an extraordinary set of technical, intellectual, and interpersonal skills who will carry forth the traditions, practices, standards and mission of ISN while maintaining a focus on the very core, heart and founding principles of the organization from which it operates as well as the humane purpose for which it was created, that being, self-less sacrifice, genuine kindness, sensitivity, compassion, exemplary character, abundant resolve and dedication with limitless boundaries in serving the many needs of its online members and volunteersThe core, heart and founding principles of the organization must be evident and highly visible in each web page, publication, communication, interaction, affiliation, volunteer and individual effort

The immediate goal of this individual will be to work closely with the ISN Founder and President, who also has served in the capacity as the creator, designer and developer of the website as well as other ISN efforts from its inception, and develop and implement the necessary and appropriate transitional plans to carry and grow the organization and its Internet activities independently of her

The role and personal attributes of this individual are considered extremely important in maintaining the current high levels of team spirit, trust, as well as mutual admiration and respect that exist within and outside of ISNThis position will be filled with an individual who considers service to the thousands who suffer from and with scleroderma and other autoimmune diseases, most of whom he or she may never have the opportunity to meet, a distinguished honor

Essential Functions

  1. Develops goals, objectives and well orchestrated, timely transitional plans as requested by the ISN Founder and President of the Board of Directors to operate and further develop the ISN website as well as other Internet activities independently of her
  2. Maintains ISN's continued well respected website presence, credibility and excellent standing in the international community as evident in its annual nominations for prestigious awards such as the Tech Museum Awards for Technology Benefiting Humanity (honoring innovators and visionaries from around the world who apply technology to profoundly improve the human condition) and the Stockholm Challenge Award
  3. Develops and oversees ISN website functions as well as ISN volunteers working within this functional area including the Webmaster for the online community and Webmaster for Secure Services; Support Specialists for the ISN/MSN Message Board; Content Development; Website Email Support Staff and other critical functions
  4. Willingness to develop a thorough understanding of the subject matter in order to properly guide development, as scleroderma is a very complex illness with many symptomsA thorough understanding of the disease process, and the needs of patients, caregivers, survivors, doctors, and researchers for clear and reliable information and ready support is vital, since the 2,000+ page website comprises thousands of internal links, and is also built upon a synergy of friendships throughout the world
  5. Willingness to learn the existing site set-up, logic and software (Dreamweaver UltraDev), to understand the importance of implementing gradual changes, with delayed adaptation of some technologies until they are widely available even in remote areas that we serve, so that we don't out-tech our customer base
  6. A driven dedication to the international and foreign language communities and to development of more resources for all countries and languages, in an environment serving equally all ages, races, religions and politics, regardless of any personal preferences
  7. Proactively participates in the analysis of growth trends and priorities to further define organizational structure; hardware and software; and appropriate skill sets of ISN volunteers
  8. Proactively assists in the recruitment of additional volunteers and acquisition of appropriate tools to support current and future needs of the organization in meeting its mission to serve its online community
  9. Develops training programs or identifies other training resources as appropriate with ISN Volunteer Services to maintain high levels of expertise and functionality
  10. Monitors progress until completion of projects initiated within all areas of assigned responsibility without putting unreasonable constraints, time allocations or expectations on existing volunteer resourcesRecognizes volunteer achievement when appropriate
  11. Offers expert Internet technology planning, software/hardware and support to all functional areas of the organization
  12. Prepares and submits monthly reports regarding completed and work-in-progress projects via email to the ISN President of the Board of DirectorsDevelops reports to analyze projections of Internet development and maintenance activities against actual figures, budgeted expenses against final totals, and suggests methods of improving the planning process as appropriate
  13. Demonstrates flexibility in approaching ISN Internet technology initiatives as appropriate for each stage in the growth and development of the organization
  14. Willing to learn about the mission, affiliations as well as the goals and aspirations of the International Scleroderma Network

General Requirements

  1. Strong communication skills to effectively represent the ISN in public or media requested interviews and meetings, and in written materials such as articles, memorandums and correspondence with volunteers as well as international and local contacts
  2. Ability to reach effective and objective impartial decisions in a timely fashion by weighing a variety of viewpoints to determine if a project is within the mission of the organization as well as implementable
  3. Ability to effectively engage in a community-based and international communications, decision-making, and to work successfully in a multilingual environment
  4. Disciplined in maintaining a demanding workload as is required by the organization
  5. Personal integrity that avoids conflicts of interest and undue influence by external parties in executing the responsibilities of this position


  1. Previous management experience in the area of Internet technology in a corporate environment or non-profit organization
  2. Experience in developing and implementing appropriate and successful training programs as needed to further develop the skills of volunteer website developers
  3. Demonstrated ability to successfully manage relations with virtual volunteers
  4. Excellent verbal and written communication skills
  5. Excellent analytical and organizational skills
  6. Ability to use software in a Windows environment with a working knowledge of Word, Excel, PowerPoint and other database software
Go to Position Description: Publications Manager

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)