Industry Partnerships

Your group can form partnerships with a pharmaceutical company (industry) and/or facilitate formation of a larger partnership between key stakeholders, including your group. 

• Strategic partnerships are traditionally collaborations between businesses with a common mission. However, many large pharmaceutical companies are beginning to build strategic partnerships for the development of therapies for rare diseases with academia, small businesses, and even groups like your own.  
  • The overall goal of strategic partnerships is to share resources in a way that promotes growth for all partners.
  • Choose a partnership with an  expertise different from your own. For example, if your researchers have the need to develop an animal model to test a promising therapy, find a strategic partner that has the resources to develop that model.
  • Since a strategic partnership involves contracts, if your group is going to establish a strategic partnership make certain your Board of Directors, Scientific/Medical Advisory Board, and possibly a business lawyer are involved in the process. 
  • Alternatively, you can help academic researchers or start-up medical research companies establish strategic partnerships by searching for possible industry partners. 
• Venture funds are another way large pharmaceutical companies are investing in the early stages of rare disease therapy development. 
  • Venture funds however tend to support start-up medical research companies, rather than academic researchers or patient groups. 
  • Usually involve a high level of engagement with representatives from the large pharmaceutical company leading or co-leading the investment and playing an active role on company boards.

Federal Funding Opportunities

Your group can help researchers find funding opportunities for discovery research at the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA).

• NIH Exploratory/Developmental Research Grant Award (R21) is available for research that may be too high-risk for other types of federal grants. 
  • Intended to fund exploratory, studies that break new ground or extend previous discoveries toward new directions or applications, as well as high-risk high-reward studies that may lead to a breakthrough in a particular area.
  • Non-renewable grant funding up to $275,000 over a 2 year period with no more than $200,000 in 1 year. 
  • Applications can be submitted 3 times per year. Check the Application Due Dates. 
  • Interested investigators are encouraged to contact participating NIH Institutes and Centers (ICs) prior to applying to make certain the project and scope are a good fit for the R21: Contacts and Special Interests
  • Non-participating ICs may offer R21 grant opportunities through specific funding announcements which would be listed on the individual IC websites and on the NIH Grants and Fundings Find Funding Search Tool (check R21 in Activity Code to narrow your search results).  
• Americas Seed Funds offered by NIH ICs allow U.S.-owned and operated small businesses to engage in federal research and development that has a strong potential for commercialization. 
  • The programs are broken into Three Phase Programs:
    • Phase I: Feasibility and Proof of Concept
    • Phase II: Research/Research and Development
    • Phase III: Commercialization
  • The NIH offers special technical assistance programs to help small businesses in all 3 phases of the programs.
  • Small Business Innovation Research (SBIR) program funds early stage small businesses that are seeking to commercialize innovative biomedical technologies.
  • Small Business Technology Transfer (STTR) program is similar to the NIH SBIR program, but requires that small business to formally collaborate with a research institution in Phase I and Phase II.
  • The SBIR|STTR America Seed Fund website provides information about the differences between the grants and how to apply.
  • It is important to contact the NIH SBIR/STTR Program Officer for the specific IC prior to submitting an application: HHS SBIR/STTR Agency Contact Information
• Parent Announcements (For Unsolicited or Investigator-Initiated Applications) lists other broad funding opportunities.  
  • Research grants include the R Series, K99/00, and U01: Types of Research Grants
  • Not all NIH ICs participate in all parent announcements, so it is important to check the ICs that may be associated with your disease about other possible  research grant opportunities.
• Find Funding Search Tool within NIH Grants and Fundings lists all available grant opportunities. The filters on the left of the page narrow the search results. 
• The National Center for Advancing Translational Sciences (NCATS) provides support for research projects, core facilities, scientific resources and tools, scientific conferences, and collaboration opportunities for small businesses, and other partners as well as grants programs and in-kind services: Funding and Notices. 
• NCATS has additional programs listed in Discovery: Understand Discovery Research Tools.  
• Other NIH resources:
  • NIH Tips for Applicants (2010) is a short video containing tips for grant applicants from reviewers and staff at the National Institutes of Health.
  • NIH Grants YouTube Page (updated periodically) is a page containing videos published by the NIH about a variety of topics related to NIH grants. There is a short Welcome Video on the homepage that introduces the organization of the content. 
  • NIH Grants Process Overview (updated periodically) is a webpage providing the steps required for the planning and submission of an application through to award and closeout.
• The Office of Orphan Products Development (OOPD), a program of the FDA, offers 2 grants:
  • OOPD Pediatric Device Consortia Grant funds consortia capable of providing expert advising and support services to innovators of children’s devices through all stages of development. 
    • Specific areas of expertise provided by the consortia include:
      • Intellectual property advising
      • Prototyping
      • Engineering
      • Laboratory and animal testing
      • Grant-writing
      • Clinical trial design.
    • List of current Pediatric Device Consortia Websites
  • Orphan Products Natural History Grants support targeted studies that advance rare disease therapy development through characterization of:
    • The natural history of rare diseases/conditions.
    • Identification of genotypic and phenotypic subpopulations.
    • Development and/or validation of clinical outcome measures, biomarkers and/or companion diagnostics.

Funding Research

Your group can help fund academic research or start-up medical research companies directly to ensure that relevant research for your disease is pursued. Funding discovery research directly can occur in several ways.

• Fundraise: Your group can raise money to fund research through crowdsourcing, special events, group fundraisers, and other endeavors.
  • Global Genes webinar Strategies for Effective Fundraising (2016) is a 1-hour video focused on different fundraising strategies. The tips are especially valuable to small rare disease groups.
  • Global Genes also has online booklets to help you learn more about fundraising, including  Rare Toolkit: Finding Your Fundraising Strategy   (2016) and Rare Toolkit: Five Essential Tips and Tools for Effective Fundraising (2014).
  • Fundraising by the National Organization for Rare Disorders (NORD) is an easy-to-read webpage outlining fundraising steps and includes links to examples of successful fundraising activities of other groups.
  • Reach out to other groups to learn what has and has not worked for their group.
• Offer research grants: Research grants usually do not include any stake in intellectual property or future revenues for a therapy developed through the funded research.  
  • Adjust the grant size offered to the abilities of your group. Sizes of grants can vary:
    • Microgrants can be a few thousand dollars.
    • Small grants can range from $25,000 to $50,000.
    • Large grants can be multi-million dollars.
  • Stimulate research interest by awarding the grant money through a Request for Proposals (RFPs) or Request for Applications (RFAs). Your Scientific/Medical Advisory Board can help determine the winning RFPs/RFAs. Grants offered in this way can:
    • Support researchers who already have a research project in progress.
    • Encourage researchers to propose and then pursue new research ideas.
    • Entice new investigators in the field to become involved in your rare disease.
  • Offer a grant directly to a leading researcher in the field to pursue a project that fills a research gap identified by your group and scientific advisors.
  • Consider channeling the grant through larger umbrella organizations if you are uncertain whether your group has the time, experience, or energy to manage the process. For example:
    • NORD: Research Grant Program Funding .
  • List your grant programs with rare disease centers and organizations. For example:
    • • Genetics and Rare Diseases Information Center (GARD) Guide for Researchers: Finding Funding Opportunities.
      • NORD: Additional Funding .
• Invest through venture philanthropy: Although usually requiring a large sum of money, venture philanthropy provides your group with an opportunity to fund the early, often risky stages of therapy development with for-profit companies. 
  • These investments usually involve millions of dollars.
  • You can fund start-up medical research companies or programs within larger pharmaceutical companies willing to focus on developing a treatment or cure for your disease(s).
  • Your group will gain an equity stake (a percentage) in the company or royalty rights of the developed therapy. 
  • Since profit is not the goal, if a therapy is successfully developed, equity stakes or royalty rights can be sold to raise money for future ventures. 
  • Venture philanthropy may also allow your group high levels of engagement with the company and/or program, thus enabling your group to provide patient perspective during the discovery stage.  
  • Due to the financial risk involved, it is important to work with your Scientific/Medical Advisory Board to determine whether the investment is a wise choice for your group’s efforts. You may also wish to consult with a business lawyer.
  • The Cystic Fibrosis Foundation pioneered the venture philanthropy model and shares their journey on the following webpage:  CF Foundation Venture Philanthropy Model .
• Other resources: 
  • Milken Institute Center for Strategic Philanthropy provides information about philanthropic investing through its newsletter and Giving Smarter Guides. For example:
    • Nonprofits: A Growing Force in Drug Development
    • Center for Strategic Philanthropy Newsletter
  • FasterCures Toolkit Foundation-University Relationship provides:
    • Information about intellectual property, venture philanthropy, and foundation-university transformative partnerships. 
    • Sample templates for agreement documents and reports.
  • CureAccelerator FAQs Repurposing Research answers questions about repurposing approved therapies to treat a different condition, including ways for nonprofit groups to become involved. CureAccelerator is a  non-profit organization that brings researchers and funding opportunities together in order to drive repurposing research.
  • Section 4 : Funding Research of the Global Genes From Molecules to Medicine How Patients Can Share Their Voices Throughout the Drug Development Process (2018) reviews the ways a group can become involved in funding research and shares the success stories of two rare disease groups.

Overview

Patient groups often choose to raise money to support research or seek other funding sources from the government or larger nonprofits. Some groups form their own grant program, where researchers submit a proposal and a scientific review committee recommends which projects to fund. Another option is to team up with other organizations that have overlapping interests to support mutually beneficial projects.

Tips for Success

• Check with other group leaders who have run successful fundraising programs, grant programs, or formed strategic partnerships early in the discovery phase of therapy development. 
• Search for research funding that may be available through special programs in your state.
• Think  outside the box, network, and stay alert for emerging innovative companies focused on rare disease research or branches of large philanthropic organizations newly supporting the development of therapies for rare diseases. 
• Persistence is key. Successfully finding funding can rely on:
  • Timing 
  • Positioning
  • Luck

Overview

Therapy development, including translational research, is a team sport. Determining areas where your patient group can support and drive research efforts will help you become an effective part of the team. Organizing virtual and in-person meetings between academic researchers and  your disease community can foster collaboration, maintain productive communication, and fuel interest in research. Meetings can promote an understanding of which therapy/treatments are currently within reach and which may be longer term goals. Special programs and meetings with the specific Institutes and Centers (ICs) of the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA) may increase collaboration.

Other FDA Meeting Opportunities

The FDA offers additional opportunities to meet with patient groups early in therapy development. If you are uncertain which meeting type and the timing of your request to meet, contact the FDA Patient Affairs Staff at (301) 796-8460 or PatientAffairs@fda.hhs.gov. Other FDA meeting opportunities include:

• Patients Ask FDA: FDA Patient Affairs Office and the FDA medical product centers developed the Patients Ask FDA portal to allow patients and the groups like yours that advocate for them to submit questions and requests for meetings.
  • Requested meetings may focus on sharing patient disease experience or better understand the FDA’s marketing review process.
  • The staff of the FDA Patient Affairs Office will route the questions or meeting requests to the appropriate medical product center or office.
• Patient Listening Sessions: Patient Listening Sessions are hosted by the FDA Patient Affairs Office and the National Organization for Rare Disorders (NORD) , a nonprofit group uniting rare disease patient groups. 
  • FDA, patients, caregivers, and advocates participate in the session.
  • Small, informal, non-regulatory, non-public discussions.
  • About disease experiences, not a specific therapy.
  • FDA staff will either ask questions or simply listen to better understand your experience with a disease or condition.

FDA Critical Path Innovation Meeting

A Critical Path Innovation Meeting (CPIM) is a meeting to discuss the science, medicine, and/or regulatory aspects related to innovation in therapy development. The meeting is between FDA staff and individuals from industry, academia, and/or groups like your own. 

• CPIM provides an opportunity to have an open scientific discussion and to hear the FDA’s perspective on the method, approach, or technology being developed.
• The goal is to improve the efficiency and success in drug development. 
• If a CPIM is accepted, the FDA may invite subject matter experts from other Centers in the FDA, including Center for Biologics Evaluation and Research (CBER) and Center for Devices and Radiological Health (CDRH).
• Materials to be presented at the CPIM are requested 2 weeks prior to the CPIM.
• The FDA staff participating in the CPIM meet 1 week prior to the actual CPIM to review the information. Other experts may be identified.
• The meeting lasts about 90 minutes.
• A brief, high level summary will be written by the Office of Translational Sciences  and shared with the person who requested the meeting.
• Topic area is added to the CPIM website. 
• Outcomes include:
  • CPIM staff may help your group connect with other investigators sharing similar medical development challenges.
  • FDA may facilitate discussions with review divisions or other FDA scientific staff.
  • Recommendations may include convening a public workshop, collaborating with other groups.
  • May lead to technology transfer activities such as a research collaborative agreement or a Cooperative Research and Development Agreement (CRADAs ) between investigators and FDA.
• CPIM topics include:
  • Rare disease progression studies
  • Biomarkers as clinical trial endpoints
  • Therapy development tools
  • Innovative trial designs
  • Clinical trial networks
  • Natural History Studies
  • Clinical outcome assessment development
  • Databases
  • Registries
• FDA Critical Path Innovation Meetings provides more detail about CPIMs.
• If you have any questions about the CPIM Program, please contact CPIMInquiries@fda.hhs.gov . 

Organize In-Person Scientific Meetings

Though it may seem like meetings that last an entire day or multiple days will be much harder to organize than short meetings, you may want to think of in-person scientific meetings—also called scientific conferences—as just a series of short meetings. However, a scientific conference does require more planning, so leave yourself plenty of time to complete all the necessary preparatory tasks. 

Just like a virtual meeting, you want to start with establishing your goals. Unlike virtual meetings, a scientific meeting usually has multiple goals. Goals may include:

• Update clinicians and patients/families about research efforts and progress.
• Provide opportunities to form collaborative agreements and partnerships.
• Establish connections between patients/families, clinicians, and researchers.
• Attract and inspire new researchers.
• Gain the interest of the pharmaceutical industry.
• Inspire clinicians to become specialists for your disease.

The skills you mastered holding virtual meetings with researchers and other stakeholders will be essential to organizing a scientific conference. However you will also have opportunities to learn about the funding resources, as well as expand your organizational skills. Before the meeting, you can:

• Find Funding through the NIH: 
  • The NIH offers both R13 Conference Grants and U13 Cooperative Conference Grants to support scientific conferences. 
  • The difference between the grants is the level of involvement of NIH. 
    • The R13 is for meetings that will be planned and conducted without much assistance from NIH staff.
    • The U13 is for events where NIH staff are substantially involved in the planning of and/or conducting the meeting.
  • All domestic organizations that are eligible to receive grants from NIH are eligible to apply for conference grants.
  • Because each IC has its own guidelines and minimum/maximum grant amounts, your group should reach out to appropriate NIH contact for current information about IC-specific priorities and policies.
    • You can apply to more than 1 IC. In fact, applying for co-sponsorship for your conference is encouraged. 
      • List of NIH Institutes, Centers, and Offices provides a good starting place to learn more about the different ICs at NIH.
    • You want to establish a relationship with the ICs relevant to your disease before you even begin the process of asking for grant money, if possible. 
    • The NIH Contacts and Special Interests lists the ICs  contacts for R13 and U13 applications. Some of the ICs also provide a brief summary of their funding priorities. 
  • A Letter of Intent (LOI) must be submitted and accepted prior to applying for a grant from each IC. 
    • Although timing is dependent on the IC, most require submission of the LOI at least 6 to 8 weeks prior to grant deadline. 
    • If accepted, you will receive Permission to Submit. Without this, your grant application will not have a home. 
    • Budget information and agenda can be preliminary at this stage.
    • Remember to:
      • Disclose that you are submitting an LOI to more than 1 IC, if that is the case.
      • Acknowledge your primary Institute.
      • Know the R13/U13 funding priorities of each of the ICs where you intend to submit LOI. 
  • When writing the grant, remember to:
    • Read and follow the directions of the specific IC to which you are applying.
    • Address every item in the directions.
    • Look at the ICs’ webpages to understand the focus of each individual IC. In other words, give each institute what they are looking for. 
    • Apply for money to support the conference outside of the NIH and include that you are doing so in the grant application. This is seen as a positive, since the more work you do, the more likely your conference will be a success.
  • If you have not written grant applications before and have an established relationship with a university through a medical researcher or clinician, consider applying through the university. A university will have staff with expertise in writing grants. 
  • The application approval process can take from 6 to 9 months from the date of submission/receipt. 
    • The grant must be received, reviewed, and awarded prior to the conference date. 
    • You are unable to request funds for a conference that has already happened.
  • You can learn more details about the grant eligibility and the application process, including submitting an LOI, using the following NIH resources:
    • NIH Support for Scientific Conferences (R13 and U13)
    • FAQs about R13 grants
• Reach out to other potential funders:
  • Larger umbrella nonprofits may offer grants for conferences. 
  • University departments may have funding available.
  • Pharmaceutical companies may be willing to offer an educational grant.
  • Philanthropists and philanthropic organizations may provide grants for conferences.
• Explore other opportunities to help fund the conference, such as:
  • Exhibitor fees (also known as booth or table fees).
  • Registration fees.
  • Sponsorship opportunity packages that will allow different levels of brand exposure or donor acknowledgement.
• Decide who to invite: Scientific conferences can be most beneficial to researchers who attend to present their work, receive feedback from colleagues, learn about the focus of other researchers, and build connections. However, your conference can be used to forge collaborations between all the key stakeholders.
  • Your staff, volunteers, members of Board of Directors, and Scientific/Medical Advisory Board can increase the availability of extra hands that may be needed, but can also recharge everyone’s drive. 
  • Patients and their families can provide the patient voice, learn about current research progress, gain a better understanding of their own role in supporting research, and make deeper connections with each other, your team, clinicians, and researchers.
  • Clinicians, both those who are already specialists for your disease as well as those who you hope to interest into becoming specialists may be valuable participants. You may also consider reaching out to medical students, interns, and residents close to the conference venue.
  • Current and potential pharmaceutical Industry Sponsors can be invited to increase their interest in partnering in the therapy development process of your disease. They can attend, exhibit, or lead a session. 
  • Also invite other patient groups, including those supporting your disease and larger umbrella groups. If you are planning on having exhibits during the conference as a way to help cover conference costs, offering reduced rates to other relevant nonprofits is customary. 
  • Remember, unlike smaller meetings, the invitations to scientific meetings should be sent weeks, if not months, in advance.
• Determine the length of the conference: Planning a longer conference means juggling more speakers, moderators, and panelists, and requires a larger budget, so you may want to start with a shorter conference. You may wish to consider that:
  • Even a conference for a full day will require some people to arrive the day before and leave the day after. 
  • A conference for only half a day may only attract people who do not have to travel far since the cost of travel may not be worth the expected benefit. 
  • If you are planning a half day conference, consider streaming the conference and/or offering a recording (you can also offer these options for longer meetings as well).
  • Researchers and clinicians may find it difficult to attend more than one day of a conference. 
  • You want the sessions well attended so the speakers, moderators, and/or panelists feel the conference was worth their time and energy, so don’t plan for multiple sessions to occur at the same time, if you are not expecting enough people to attend them. 
  • You know your patient and family group better than anyone, so consider what conference length will work best for them. 
  • Don’t plan for more sessions than you will have people to moderate or lead them. You will want to get at least informal confirmation that key researchers and speakers are interested in holding a session at your conference prior to determining the length. 
  • Remember your goals of the scientific conference. 
• Establish location: After you determine how long your scientific conference will be, it is important to find a good location, both city and venue. 
  •  The conference location and venue may be affected by many factors including the number and size of rooms needed, length of the conference, technological needs of different sessions, ease of accessibility, and specific requirements of outside grants or funding. 
  • If the event is more than 1 day or people are expected to travel from a long distance, the availability of reduced rate accommodations may need to be considered.
• Choose the date of the conference: It is unlikely that you will find a date that pleases everyone, but you obviously want to choose a date that allows your target audience to attend.
  • The desired venue and key researchers schedules may help narrow the date down. 
  • Dates of established conferences that may compete for the same audience should be avoided.
  • It may be possible to tag a half day conference before or after a larger conference that some of your members, speakers, and/or researchers may already be planning to attend.
  • If people are expected to travel from long distances, consider how weather may impact travel on the dates you are considering.
  • Patients may also find travel in different weather more or less possible, but this consideration is probably already on your radar. 
• Consider different session formats: Unlike shorter meetings, each session of a conference meeting can follow a different format. The most popular are panel, roundtable, and speakers.
  • A panel discussion, or a panel, is a small group of people (3 to 4) who have gathered to talk about a specific, pre-selected topic. 
    • Panel sessions are usually conducted for an audience and have an open question-and-answer session at the end. 
    • A panel discussion is good for discussing a topic from a multitude of angles at the same time.
    • It usually has a single moderator that guides the discussion by asking the panel members questions or for opinions. 
    • Good panel members are usually experts in their fields, but the point of a panel is to hear multiple points of view on a single topic. For example, a panel of all academic researchers is a very narrow panel. A more balanced panel might have an academic researcher, a member of your group, and a clinician.
  • A roundtable discussion, like a panel, is usually focused on a single topic that is discussed and debated in depth by a relatively small group of people.
    • In general everyone in a roundtable discussion is expected to participate in the discussion; it normally does not have an audience. 
    • The format is good to evaluate options or ideas using the expertise of several professionals. 
    • The moderator should be primarily concerned with guiding the conversation to achieve the goal of the discussion.
  • A presentation provides a way for 1 or 2 speakers to present information about a single topic to an audience.
    • Generally, the speaker(s) give(s) a presentation and the question-and-answer session is facilitated by the moderator. 
    • If there will be more than 1 speaker, the speakers usually have similar views and are colleagues or collaborators.
    • Though a speaker usually takes questions directly from the audience, the moderator can have several questions prepared in case the audience is silent.
• Firm up the agenda: After you have the location and the date, it is time to finalize the agenda. You will want to send the agenda out in plenty of time for people to register and make travel plans.
  • Get commitments from the session leaders for each session. Agree on topic, session format, and determine preferred times.
  • Require session leaders to submit technological needs.
  • Have substitutes in mind in case a session leader has to cancel close to conference time.
  • Be mindful of time while arranging the schedule.
    • Leave a bit of time between sessions for attendees to go to the restroom, stretch their legs, and allow their minds to move onto a new topic.
    • Build in adequate time if attendees have to change rooms in between sessions. 
    •  Schedule breaks and lunch. A morning and afternoon break as well as a break for lunch can offer time to recharge as well as time to make more one-on-one connections.
    • Providing lunch as part of the conference package can also increase connections and increase attendance of afternoon sessions.
    • Most conferences break for the day prior to the evening meal, but some schedule special small sessions in the evening.
  •  The agenda or program for scientific conference should include:
    • The day(s), time(s), and location(s).
    •  The name and contact information of the facilitator.
    •  The meeting format and topics.
    •  The names of each speaker, panel member, or roundtable participant.
• Promote the meeting: Preliminary registration and hotel information can be promoted prior to the agenda being finalized, but it is helpful to have the final agenda available before registration begins.
  • Keep the goals of the meeting and intended attendees in mind when considering ways to promote the meeting. 
  • Narrowly target your intended attendees if there will be very limited space.
  • List the upcoming conference on your group website’s event page, but as it gets closer, put it on the home page and any other frequently visited pages as well.
  • Send email blasts and messages through social media and mailings if you want to reach a broader audience.
  • Connect with other groups who may have members or staff interested in attending the meetings.
•  Follow-up after the meeting: Unlike small meetings, you are likely to come out of a conference with multiple notes, business cards, and participant lists. It is important to organize these while they are still fresh in your mind.
  • If you get a business card, try to quickly jot down who the person is and where you met them (an academic researcher, in the audience at a panel) and any detail that might jog your memory about the conversation.
  •  If you have a conversation with a panel member and do not get a business card or contact information, circle their name on the agenda. Again making short notes or jotting down some keywords can help you remember after the busy conference why this person’s name was important. 
  • It is very important during the conference to keep track of anyone with whom you promised to follow-up. Use a note app on your phone or carry around a small notebook to keep a running list. Make certain to note who they are and what you offered to send them.
  • You can also reach out to a person you did not get to speak with during the meeting. For example, maybe you heard from your staff, group member, or other attendee that a specific person who attended the conference might be interested in joining your group’s effort to develop a treatment or cure.
• Tips for success:
  • Break down the tasks of planning into doable steps and remember a good leader knows when to delegate and ask for help. 
  • Reach out to other groups who have recently held successful scientific conferences.
  • Always keep your goals in mind throughout the planning process. It is easy to get sidetracked which can lead to trying to accomplish too much in 1 meeting, especially your group’s first conference.
  • Consider starting small by limiting the number of sessions and attendees. A small successful meeting can be followed next year by a larger meeting and may increase funding support. 
  • Live streaming sessions and/or posting recorded sessions on your group’s websites can increase the number of people who will benefit from the conference.
  • Ask speakers and moderators for any slides they will be using in advance and having staff make certain the provided formats are supported by the systems that will be available can help minimize technical problems at time of presentation.
  • Familiarize the speakers and moderators with the technology they will be using before the start of each session, for example, don’t assume they will know how to advance slides, turn on the microphone, work the pointer, etc.

Organize Virtual Meetings

Virtual meetings or conference calls can be a good starting point to bring researchers and other key stakeholders together. Virtual meetings require a smaller time commitment from the participants since there is no travel required. Although your group may be familiar with holding virtual meetings among staff, volunteers, medical advisors, or your board of directors, you may want to make a few changes when involving outside medical and scientific researchers.

Consider your goal for the meeting. You may want to choose only 1 or 2 goals, especially for the first meeting. Some possible goals include:

• Introduce researchers to one another and to key stakeholders.
• Have researchers present a brief overview of current projects and goals.
• Review relevant experiences of patients with researchers.
• Brainstorm tentative short- and long-term research goals.
• Highlight areas for collaboration.
• Establish open sharing of data and analyses. 

Successful meetings rarely just happen. Knowing how to focus planning efforts can save time and energy, while still providing the elements needed to achieve the meetings goals.  There are a number of steps you can take before the meeting to ensure it is productive.

• Restrict meetings to key participants:
  • Virtual meetings with limited participants can be easier to moderate and allow everyone a chance to have their voice heard. 
  • Researchers may speak more freely in a smaller group.
  • Minutes from the meeting can be sent to a larger group of interested parties after the meeting.
  • Edited recordings of the meeting can be made available to staff, volunteers, or even posted on your group’s website (with proper consent from participants).
• Use meeting goals to guide invitations:
  • Smaller meetings are better for enabling discussions, making connections, and making decisions.
  • Larger meetings are better for information dissemination and presentations.
  • Patients, families, and caregivers may not need to attend a meeting designed to make connections between academic researchers.
  • Your group’s Medical/Scientific Advisory Board may offer helpful insight or help translate technical research terms.
•  Establish the meeting platform:
  • A voice-only conference line may be the easiest for all to access and is the least technologically demanding, but it will limit the type of sharing of information available. Materials to be shared will need to be sent prior to the meeting.
  • Online meeting or web conference platforms will allow screen sharing but are not always accessible to everyone. Skype, Google Hangouts, GoToMeeting, and Zoom are the most popular programs/applications for virtual meetings.
•  Tips for successful meetings:
  • Familiarize yourself with the technology being used in the meeting. If you are not tech savvy, you may wish to appoint a staff member with the right skill set to the task. Generally, you will need to know how to:
    • Start and end the meeting.
    • Share your screen or webcam, as well as help others share their screen.
    • Mute and unmute microphones.
    • Share files.
    • Send and read text chat messages.
    • Record the meeting (if applicable).
  • Draft an agenda for the call and include when inviting participants and then share a finalized version at least a week prior to the meeting.
    • Align the agenda with the meeting goals. Is the meeting to generate ideas, facilitate collaboration, or to make decisions?
    • The agenda should also include a list of topics, attendees, facilitators, and the time and meeting platform. 
  •  Assign meeting responsibilities. If you are working together with multiple people to plan the meeting, you can divide up the tasks each person will be responsible for before, during, and after the meeting.
    • Consider having someone other than the facilitator being responsible for watching the clock, taking notes, and sending meeting notes after the meeting. 
    • Depending on the technology being used, you may want to have someone assigned to help the facilitator in case any technological issues happen before or during the meeting.
  •  Be mindful of time.
    • Start the meeting on time even if all the attendees are not present and finish at the time listed on the agenda, in case participants have other commitments.
    • Keep the first meeting under an hour. Longer meetings can be scheduled later as specific topics are identified that need a more in-depth discussion.
    • Ask the timekeeper to chime in when you have reached the end of allotted time for a specific agenda item and at 3 breakpoints: halfway, 15 minutes left, and 5 minutes left.
    • Moderate to keep meeting on topic, but be flexible. Be willing to stop a discussion or move non-urgent items to the next meeting.
  •  Agree on time/date/format of next meeting.
    • Finding a meeting date and time may be difficult to accomplish between meetings when more than 3 people must coordinate.
    • During your meeting wrap up, try to get a general idea of when the next meeting should be held (a week, a month).
    • If you cannot get this done, use an organizing tool like Doodle, where participants can enter their own schedules instead of asking for availability via email.
  •  Send meeting notes highlighting action items from the meeting.
    • Notes should provide a summary of discussions, record important decisions, list action items, and function as a document to remind everyone of what was agreed upon and why.
    • Compile notes sooner rather than later. The meeting notes should ideally be sent out within 24-48 hours after the meeting, so that participants can make appropriate corrections as needed.