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Position: Major Grants & Gifts Officer
Location: United States, Remote Based
Contract: Full Time
Salary: $70,000 – $75,000

Overview of Responsibilities 

The Major Grants & Gifts Officer works closely with President & CEO to identify and nurture relationships with potential large funding opportunities in both the public, private, and corporate sectors.

The primary focus is to lead the search for relevant grants and foundations for the organisation, from proposal development to submission and management of funds when awarded. 
 
They will also meet and work with major donors and prospects with significant giving capacity to accomplish their giving objectives in the form of annual giving, major and planned gifts. 
 
The Major Grants & Gifts Officer will engage in and be responsible for all aspects of the major donor development cycle including donor identification, cultivation, solicitation, acknowledgment, and stewardship.

Key Responsibilities/Essential Functions 

The major responsibilities of this position include, but are not limited to:  

  • Conduct research on prospective institutional, corporate, and family foundations, as well as established government funding programs, to evaluate grant seeking opportunities.
  • Collaborate with internal departments to effectively gather information necessary for the development and submission of grant proposals.  
    Identify major gift prospects; undertaking prospect research to propose, develop, and cultivate prospects for major gifts using a structured, strategic, and measurable approach.  
  • Cultivate major gift prospects, investing the necessary time and energy to build relationships designed to understand the donor/prospect goals with the expressed purpose of alignment with the Society’s mission and objectives.  
  • Solicit major gift prospects, moving prospective major donors along the donor pipeline ready to receive appropriate asks based upon donor intent and interest.  
  • Stewardship of major gift donors. Develop stewardship strategies that continue the major gift relationship for future gifts and planned giving opportunities.   
  • Execute and report on quarterly/annual fundraising plans, donor solicitations identification, cultivation, campaigns (capital and annual) and stewardship efforts.  
  • Work with communications department to prepare highly customized proposals for prospective donors, as well as other solicitation materials.  
  • Work collaboratively, under the direction of the President & CEO and collaborate with the Development and Communications team to accomplish individual, team and organization funding goals.   
  • Track prospects and major donor contacts in portfolio using organization tools and tracking methods via Monday™ CRM. Ensure that all major donor information entry, storage, and special requests are recorded accurately and accomplished.   
  • Work with Development Team to maintain accurate and up to date information on major donor finances and provide consistent and timely reports to the President & CEO.  
  • Work toward annual fundraising (annual and capital) goals and operating campaigns.
  • Continually review, update, and correct CRM database records for individuals and organizations.   
  • Participate in key, organization-wide dialogues to identify areas of fundraising opportunity across strategic programs. 
  • Perform other duties as assigned.   

Requirements 

  • Bachelor’s degree, Master’s degree and/or CFRE preferred
  • A minimum of 5 years’ experience in major gift fund development with a proven track record of major gift program success – experience in health sector is preferred, but not a requirement   
  • Ability to lead work in a virtual team setting, and work independently  
  • Experience and record of accomplishment in successful grant applications 
  • Detailed and in-depth knowledge of fundraising, it’s impact and relevant tax-laws associated
  • Experiences of working internationally is desired 
  • Demonstrated success as a relationship builder with superb interpersonal skills, persuasive communication style and ability to articulate our mission in an impactful manner
  • Excellent verbal and written communication aptitude 
  • Ability to think strategically, multi‐task and meet deadlines
  • Ability to determine how best to develop and maintain effective relationships with donors and determine when and how a prospective donor can be successfully solicited for a gift/gifts  
  • Demonstrated ability to understand the needs and interests of donors in order to develop/strengthen relationships 
  • Established current relationships with HNW individuals and organizations
  • Ability to participate in all aspects of the giving cycle  
  • Must have knowledge of planned giving techniques and vehicles  
  • Ability to work evenings and weekends to prepare for and attend Society events
  • Ability to compile and present clear and effective reports to all levels of stakeholders, both internally and externally
  • Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint)

Work Environment

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some weekend work.

If you would like to be considered, please complete the form below.

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    Position: Program Coordinator – Centers and Networks of Excellence
    Location: United Kingdom or United States (remote position)
    Contract: Full-time
    Salary: Up to $45,000 / £34,000 DOE

    Overview of Centres of Excellence Program

    The average time to diagnosis of an Ehlers-Danlos syndrome or hypermobility spectrum disorder is 10-12 years. For some, it can take decades.

    Too many in our community report that they are forced to travel far and wide to access a physician who knows how to manage their healthcare, often at great personal expense, and often with incredibly long wait times of over two years. In some countries, there is no recognition of EDS or HSD, or very little knowledge or understanding on how to manage symptoms.

    These are multi-systemic conditions, and problems often go unconnected for many years. Many report being told their symptoms are “all in their head” or are denied recognition of pain and other widespread symptoms they experience. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments.

    Early diagnosis is crucial to positive patient health, but after diagnosis, there is often little or no follow-up care. When diagnosed, patients are often not given any information about their condition, offered supportive self-management for aspects of their care, adaptions that can be made to improve quality of life, or informed about where to find support for a chronic, lifelong condition.

    In 2022, The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.

    Toward that end, our aim is to develop a network of Excellence for EDS and HSD around the globe. This will be a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide and alleviate their pain and symptoms.

    The Ehlers-Danlos Society’s Center of Excellence program will ensure critical standards of care with each center required to meet rigorous clinical, research, professional education, and patient care criteria. Geographical, financial, and cultural considerations will advance the highest standards of care to improve the lives of people living with EDS, HSD, and related conditions worldwide. We are looking for someone to join our team to help coordinate this critical work.

    Overview of Responsibilities

    This Program Coordinator will be highly motivated, exceptionally organized, people and mission-driven, and able to lead/manage critical projects/programs simultaneously delivering to set deadlines. This role will coordinate our global Centers and Networks of Excellence program that will be formally launched in late 2022.

    Key Responsibilities/Essential Functions

    • Track Screening Center of Excellence (SCOE) application submissions.
    • Assist in the design and development of standards, best practices, policies, and procedures.
    • Analyze and drive standardization of processes across the service ecosystem.
    • Track and report on project/program progress and outstanding deliverables to ensure successful implementation.
    • Work with dedicated Graphics and Web designers to ensure website and communications are up to date.
    • Facilitate meetings to achieve alignment across network teams throughout stages of implementation and operations.
    • Oversees and consistently maintains facility, contact, and program information in tracking documents.
    • Produces reports as required by Senior Management team.
    • Work with Senior Management team to coordinate newsletter and other communications to network members. 
    • Respond to COE and NOE member inquiries and route to appropriate people for follow‐up when unable to help.
    • Manage all communication with members of the program and ensure they are fulfilling the required criteria consistently.
    • Manage the EDS and HSD Global Registry and Repository (REDcap).

    Work Environment

    Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some weekend work.  

    Requirements

    • Exceptional interpersonal, organizational, and critical thinking skills.
    • Proven Experience with managing REDcap database.
    • Ability to anticipate, identify, analyze, and address issues of concern or significance; exercise discretion to provide timely information and necessary updates.
    • Ability to perform complex tasks and prioritize multiple projects with little over-sight.
    • Skill in examining and re-engineering operations and procedures, researching and formulating policies, and developing and implementing new strategies and procedures.
    • Strong work ethic coupled with an enthusiastic and passionate approach to work.
    • Excellent strategic planning and prioritization skills.
    • Ability to make effective decisions with strong self-confidence and leadership skills to deliver at pace.
    • Ability to gather data, compile information, and prepare reports.
    • Ability to create, compose, and edit wide-ranging documentation with a keen eye for detail.
    • Adaptability to meet changing demands with a positive attitude.
    • Demonstrated ability to maintain confidentiality.
    • Strong IT skills and confident with learning/using new systems and platforms quickly. Preferable experience with Microsoft Suite, Slack and Monday.com.
    • Demonstratable experience in project/program coordination from conception to delivery.
    • Hands on experience with project management tools, preferably Monday.com.
    • Must work well to deadlines and under pressure in ambiguous situations.

    To be considered for this position, please complete the form below: 

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      Internship Opportunities

      There are currently no internship opportunities available – please check back later!

      Volunteer Opportunities

      Overview of Responsibilities 
       The Community Voice Expert panel is made up of the community representatives that sit on the EDS and HSD International Consortium; there is one expert per group or committee. They must have extensive experience and/or knowledge within the specialty group of interest. Understanding the essential characteristics of EDS and HSD, its management and development of communication skills are key components to this role. Community Voice Experts contribute to educating other community members, but they can also help update knowledge of health professionals and participate in the development and evaluation of educational programs or guidelines, as well as participate in community events.  

      The International Consortium 
       The International Consortium was created in 2014 by what was then Ehlers-Danlos National Foundation (EDNF) and The Ehlers-Danlos Support UK (EDS UK), in preparation for the reclassification for the Ehlers-Danlos syndromes (EDS), and to create management and care guidelines for the first time, leading to the 2017 publication in the American Journal of Medical Genetics. It was clear there was a need for a global group to facilitate the work of this independent group of experts, and that need was a driving force in setting up The Ehlers-Danlos Society. 
       
      Experts are invited to join the International Consortium based on their clinical or research experience and their commitment to progress, research, and collaboration in working on the many challenges and questions faced by families, clinicians, and social agencies. Consortium members are organized by medical specialty and research interests into committees and groups coordinated by the Steering Committee. 
      The International Consortium is an independent working group of medical professionals and experts. The consortium’s administrative and event-planning needs are facilitated by The Ehlers-Danlos Society, but all work and opinions are independent and come solely from the consortium members. 

      Key Responsibilities/Essential Functions 

      • The major responsibilities of this position include, but are not limited to:  
      • Serve as an ambassador for the wider EDS and HSD community identifying community needs 
      • Contribute to updating knowledge of health professionals.  
      • Contribute to the development and evaluation of educational programs.  
      • Help define patient-relevant outcomes.  
      • Represent community members within the specialty group. 

      Requirements 

      •   Extensive knowledge/experience of EDS and HSD, particularly within the group’s specialty.   
      • Willing to get involved in research and activities  
      • Motivated to engage with the community  
      • Exhibit an awareness of the community perspective surrounding EDS and HSD  
      • Actively attend and participate in meetings. 
      • Effectively communicate with stakeholders across the community and professional networks. 

      If you would like to be considered, please complete this form.

      Overview of Responsibilities 
      Inspire Volunteers work with the Community Education Department to provide information and resources to people with EDS and HSD. These volunteers moderate, create, and contribute to discussions on Inspire, where the Ehlers-Danlos Society hosts a community for those living with EDS and HSD. Volunteers do not provide medical advice but identify and provide information, resources, and support to community members.

      Key Responsibilities/Essential Functions 

      The major responsibilities of this position include, but are not limited to:  

      • Oversee and contribute to message board discussions, helping community members learn about types of EDS and HSD, common comorbid conditions, treatment options, and resources available for their needs
      • Ensure Community Guidelines are followed and assist in making the message board a supportive environment for members  
      • Provide accurate information, and correct misinformation so that members learn and trust the information provided to them

      Requirements 

      • An approach that demonstrates kindness, caring, a non-judgmental nature, and diplomacy 
      • An approach that recognizes and supports diversity in the community
      • The ability to deal with inappropriate conversations and conflict 
      • A good knowledge and a willingness to continue learning about the types of Ehlers-Danlos syndromes and hypermobility spectrum disorders, and the common comorbid conditions  
      • A good knowledge and a willingness to continue learning about the types of Ehlers-Danlos syndromes and hypermobility spectrum disorders, and the common comorbid conditions
      • Good English language reading, writing, and speaking skills 
      • Willingness to independently research for answers 

      Work Environment  

      This volunteer opportunity is fully remote. Volunteers will have flexible schedules and should be able to commit to volunteering for 5-10 hours/week. 

      If you would like to be considered, please complete the form below.

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      The Ehlers-Danlos Society’s commitment to diversity and inclusion drives the four pillars of our mission forward: research, education, advocacy and care, and awareness. We are a global, multicultural organization, as such we seek to increase opportunities for individuals of diversified backgrounds, and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates and promotes opportunities regardless of race, religion, color, national origin, sex, disability, age, veteran status, and other protected status as required by applicable law.