 Yeah, thank you so much, Thomas, for your kind introduction. I'm very happy to speak at the MP8GM about fundraising for patient groups and the specifics of industry funding. My name is Jan Geisler. I've been a leukemia patient and cancer advocate for about 20 years. I'm also chair of the workgroup of European Cancer Patient Advocacy Networks. We can and also CEO of Patvocats. I'm really happy to take you through a whole series of things that you need to know about getting funding for your patient organization and also different types of funding, as well as the specific issues connected to industry funding. What I'm going to speak about is actually about the basic principles of fundraising, different types of funding, fundraising, planning, good timing of fundraising, different funding sources and also the specifics of fundraising from industry. So a bit about the do-stones and what can go wrong in doing so. So first starting about the basic principles of fundraising and planning. The basic principles of fundraising planning are really two things. First of all, first think about what you want to accomplish as a patient advocate or with your patient organization for your community, for the patients that you serve, for the mission that you serve and then look for a way to fund those activities, not the other way around. Often we are being offered opportunities to do fundraising, but if that's out of our main scope, it will keep you busy with things that are probably not most important for your community. And that's my first thing about your mission and really your objectives and then try to find money for it. So just as examples, support the myeloma or AL amyloidosis patient and their families, think about how you can provide information and services for them or work with clinicians to make sure that they give best possible care to the patients that you serve or trying to influence policymakers in your country or authorities to make sure their decision really meets patients' needs or work with researchers to make sure that research is being done based on patient preferences, on the needs of your community, on the unmet needs and what patients really need most. So think about these things first and then think about who could actually support your work with funding. And then secondly, don't think about funding first. It's always based on relationships, no matter whether it's an industry funder or a public funder or a philanthropic funder or if it's private donors, you always need to have some kind of relationship to them. They need to understand your mission. They need to understand why you're there. They need to understand why you want their money for what you're trying to do. And then you can actually ask for funding. They will hardly give money to no-nameers, to people they've never met before or organizations. And that's why it's very important to think about relationships first and then think about how you can ask them to support your work financially. And there's a cycle behind that. Actually, the fundraising cycle really thinks first about the identification of potential funders. So think about connections and network of your board members or volunteers in your groups that would probably be donors or supporters or funders of your work. Where are people with similar interests? Where are organizations with similar interests like yours? Where are organizations that would be really in favor of the work that you're doing? And once you've made your shortlist about organizations, then you can start to build relations. You can start to contact the prospective funders or the funding programs. You can think about how does their overall funding scheme fit into what you're doing and you're building a relationship to the funders. Then you can actually solicit funds. So you can ask for funding with a very specific request. So you can say within the funding program, within the year, within the location area, within the program that they have like a foundation or public funding program, you can ask for a very specific thing. Then of course, once this has been granted, there's more work to be done because you need to give feedback. You need to administer the funding that you get and also need to provide acknowledgement for the funding that was provided. Sometimes we forget to say thank you or sometimes we forget to actually report back how the project is doing, what it is delivering and so on. And that's a very important part because if you don't do that letter part, they're probably not going to be funding you next time because they're not convinced that what you asked them for has actually been accomplished or hasn't been accomplished or has changed over time. That's not a problem. But this is a cycle. You can only go to one if you've passed number four and that way you can actually build a relationship to a funder that is actually really keen on seeing your work progress and fulfilling the mission that your organization has. When you think about different funders, there are a couple of questions you might think about when considering different funding options of funders. First of all, your legal status because the registration might be important for some of the funders. It depends whether you're a nonprofit or a charity or a nonprofit company or any kind of organization. Some governments have specific requirements in terms of tax status or something like that. And there are also sometimes organizations that would actually help to assist in terms of transparency registers or something like that. So think about your legal status and also your registration, public registration, for example, and transparency registers. Then when you think about different funders, think about shared purpose. Does the funder have similar goals like yours? Are they trying to address similar things to a community? Why should they support you? Is there a shared purpose between where you want to go and between where they want to go? Do you and the funder have a shared target group? So are they interested in the same target group? Are they interested in the same indication? Are they interested in your region? All these questions are important because usually they fund things if they're trying to, let's say, serve the same target group or population. Then of course, it's important to look at do they have related projects? So have they funded other projects similar to yours? Have they funded other organizations like yours? So do they have any experience with organizations like yours or specific interests in a specific topical area? So all these questions are important when you think about funders and probably also think about some funders that might not be interested for one of the reasons that I've stated and that can save you a lot of time by not sending funding requests to organizations that are probably not so interested. Then thinking about types of financial support, they're actually three main types. They're of course one-time donations. So that might be one-off charitable donations from sponsors and there is no relationship, there is no service in return. So you don't report back, you don't really invite them to meetings, they just give it out of philanthropic reasons and actually just because they support your mission. Then the second type of funding are core grants or annual sponsorships or sustaining sponsorships or something like that. So those are unrestricted annual grants that cover your core activities. They're not connected to projects, but they fund the core functioning of your organizations like the day-to-day running of your organization because of course a lot of work that an organization does providing a website, having staff that is not directly related to projects, for example, financial staff or something like that or equipment that your organization needs or meetings of your board or running an AGM or having travel expenses to meetings, all these things might not directly be related to a project. So an annual sponsorship program would actually cover that core bit of your organization which is not related to projects. Then the third time for funding which is probably most frequent in terms of funding is funding for specific projects. So the patient organization actually retains total control of the project, operational control and actually works with sponsors by updating them regularly about the progress on those projects. And there are different subtypes of that. So like project sponsorship where a project is being implemented in collaboration with sponsors. So the sponsors are part of the project team. They provide regular feedback. They maybe provide input on some things. So that's project sponsorship. Then there are unrestricted project grants where the sponsors have no involvement in the project. For example, a campaign, a training, a conference, sponsorship of equipment or fellowships or research works or surveys or something like that. That's an unrestricted project grant because the sponsor is not involved. They just support it and it's being acknowledged as a sponsor. Then reimbursement of direct and indirect costs. That's a subtype that is very frequent on public funding because very often you get a budget but you need to prove that you've spent the money according to the funding rules and then they reimburse those costs by proving the time worked, the staff costs, the external costs and so on. And then you get a reimbursement for that. That's the typical scheme for European Union projects in Horizon 2020 or Horizon Europe or IMI where you actually prove your costs based on auditing rules and you get the money back. And then of course, Honoraria, and I don't want to neglect that. Think that your work is very precious even if you might be volunteers for your organization. You spend hours and hours on a project and you donate that time to the organization. So it's fair in a sponsored project that the sponsor supports the time and even if you decide to donate it to the organization, the organization might charge this to the project as a hypothetical cost or it might pay your work time when you're doing this in a project and that's also specific funding and always think about even if you feel you're a volunteer, your work is very precious and has a price. And then talk about timing, timing is everything and it's really important to plan fundraising ahead of time because funders usually have funding cycles and timelines like application deadlines, meetings of grant review committees and your planning cycles. And usually when you ask funders they can tell you about their schedules. They for example, in pharmaceutical companies very often the budgets are being fixed months before the new calendar year and you actually need to know when they meet and by when they need to have your applications for funding and your total budget requirement for next year. Otherwise you might not be on the budget. And the same applies of course to public funding. They usually have calls and they have submission deadlines and if that deadline is over you have no chance to access those funding later on. There is no, I have been late, it's a fixed day. Then always think about the long time of processing approval of funding requests. It can take months in multiple iterations where you need to tweak your proposal of your funding request until the funding decision is being made and also the time between funding decisions and the contract that you get and the iterations about the legal terms and then the payout of the funding. And that's why especially on pharmaceutical funds this can take months. And it's always important because retrospective funding is impossible very often. So you cannot start work now you propose something but then the funding period takes longer. And in the end when you get to terms with the sponsor they say, but you've already started the project we can no longer fund things that have already started. So be very careful about retrospective funding because it usually doesn't work. A good way around that is usually to define different phases where you say, okay, we've started with phase one and there's a new phase two which actually starts in three months. So we are applying for the phase two and there's a separate funding for that phase because then it's not retrospective. Forget about the first phase but the second phase of the project can then be funded. So that's a way around retrospective funding sometimes. But it's very important overall to do annual budgeting and planning because the funders usually have annual budgets. They have a budget for a year for supporting patient organizations or for running project in a specific therapeutic area or in a specific research area or for communication tasks or whatever and there's usually no second opportunity. So if you come across three times a year with new ideas they might just say, but we don't have any more budget because everything is allocated. And so usually that two times of the year especially for example for industry. One is the year before when they actually fix their budget and allocate their budget between different organizations that they support and you need to apply before that. And then towards the actual towards the end of the actual year, you usually have a time when they see they haven't spent everything. For example, an organization hasn't requested the funding that was budgeted or something went wrong there. So there might be residual funds and sometimes after summer it might be a good time to ask will there be any residual funding? We have a project coming up. Now is there any chance that you have residual budget which will not be used? Because for example for pharma it's quite often that if a fund is not being used in the calendar year it gets lost for the person that owns it in the company. So that's by late in the year it might sometimes be worthwhile asking is there any residual budget you have left over for the year? So that's why it's important to create an overall fundraising plan. Planning funding and sponsorship end to end is really, really important. And that's why there are a couple of elements if you do kind of a fundraising plan for your patient organization. In such a fundraising plan you think about identifying priorities and needs that you want to actually accomplish through fundraising. It helps you to focus your organization really on the mission and program because you think what are the essential elements that we need to fund over the year? It helps you to oversee how many funders and funds you need so you know which companies or which philanthropic organizations or which governmental funds you want to access during the year for which projects. It also streamlines your communication because the other side the funders might not be confused that you're coming with an idea now and you're coming with another idea two months later. So you can really tell this is our plan for next year and this really helps you to spread the course and say what you're trying to accomplish and you can tell the funders this is how you can help overall and these are the bits and pieces we're planning. It of course creates accountability because your resources and the outcomes that your organization generates are being connected. And then of course if you have that plan it's much easier to provide reporting to the funders and thank you because you know exactly for what you requested funding, what you have accomplished and what you use the funds for if you have that plan because then in your annual report it's much easier to say your support as a funder has helped you as to accomplish this, this and this. So that's why the plan is also very important for reporting. That sounds theoretic but I want to give you a very concrete example. If you think about annual planning it would help funders if you came up with an annual plan and say how much money do you need for what? And here's an example how you could structure it and of course the numbers on there are totally exemplary so they are not realistic, they are just giving examples. So for example I've stratified here into core grants and six different projects and you would actually say what's the total budget that you require for that activity and there might be a project, project one for example would run for two years and you would for example need 90,000 euro overall over the whole period of the project but next year for the upcoming year you would just need half of it, so 45,000 and you actually find that you want two companies to support it and you want three companies to support it but you would have commitment already by two so you need three companies of 15,000 each and so far two have committed so you have a gap. So at the sponsors meeting you would say we need a third supporter for this of 15,000 because our funding gap for next year is actually 15,000 and that way you would work your sponsors through your annual plan and say these are the projects where we need support, this is your pick list this is your wish list. So go to the sponsor and say what are you planning to support? Here's the outline of the project you know what we're trying to do do you have budget for us and we really need another sponsor for this project. So this is just an example which really helps to structure the discussions with funders. So let's now talk about different funders and the specific issues around industry funding and I first want to talk generally about different funding sources. There's public funding. So public funding usually is being provided by institutions, by the government or agencies of a government and so on and it might be either the EU if you're engaging in European projects or of course national funding sources like from the state, from the ministries and so on. Then there's philanthropic funding it might be research organizations or charities it might be nonprofit organizations like for example MPs providing scholarship and capacity building programs grants or there might be fundraising events and activities where you do a marathon or cycle for cancer or whatever or you would suggest to private individuals to do direct debit campaigns so give two euros a month or 10 euros a year or 50 euros a year to support your charity of course fundraising events like coffee mornings, bake sales and so on. Then there might be private donations like for example in high level donations from philanthropists where you try to go to big trusts or people that actually do philanthropic donations and might give a larger some typically these are people where somebody in the family has been affected for example by a multiple myeloma or so and they would really like to support your course by a larger donation. Of course you can raise membership fees and then there's private funding and they're basically two types insurance company sickness funds or other non-related might also be food companies or health companies outside of pharma and then there's pharma funding in the area of private funding. So all these different types are theoretically possible but the basic principles of working with any sponsor in applying for industry non-industry funding is actually that you need to watch your credibility transparency and democracy because they are the most treasured assets of patient organizations. I mean, if something goes wrong in a collaboration project if people are being criticized or organizations are being criticized usually commercial organizations it's a dip in their credibility but it doesn't take them at risk while credibility transparency are the things that are the most precious assets as a patient organization. If you lose that you lose everything and that's why you need to put always credibility and transparency first and everything afterwards, everything else. So keep your independence and independence doesn't mean independence from industry independence means that any funder who's putting up conditions to which you as a nonprofit as a patient organization don't agree with that you can actually say, we agree to disagree. I'm sorry, you can't support us or I'm sorry, we cannot take your support for this. So keep your independence and independence means that any project can stand on multiple feet that if you take away one sponsor that your organization or your project is not a total risk. And also in terms of independence be aware of services in return. Very often you're being asked to provide something in return. It might be communication it might be access to data it might be recruitment of patients be always very careful there might be collaboration projects where it makes sense but services in return are always a risky path and you need to be very conscious that if you provide them that they don't risk your credibility, transparency or the trust that patients have in your organization. And that's why it's always important to create define and communicate the boundaries. You need to learn to say no and it's not a problem to say no but it's better to say no instead of saying yes, but they're not doing it. And that's why I say we can do this but we can't do that. Here's the boundary. We can actually generate data with a survey of patients but we won't share the personal data or we can't provide you with the raw data or we won't send on your newsletters or whatever say what you do and what you don't. And if you're very clear from the beginning then there's no misunderstanding. So mutual trust is very, very important and in that it's very important to be partners but not friends. And it's sometimes very difficult to keep that kind of professional distance with people you work with on a day to day basis. And what I've seen very often, it's very often important to put things in writing. You meet people, you trust people, you've been working with somebody for years but then suddenly your partner actually changes jobs and they work for something else and then the new person comes in. All memories change that people two years later have a total different recollection of what you discussed at that meeting and that's why even sometimes it sounds bureaucratic. It's important to put that in writing even if it's just minutes or some kind of shared note that people really know what has been decided and that later on memories will not change when people change. So what can go wrong? And specifically now thinking about working with industry I said, credibility is your most precious asset. So don't try to hide anything, always be very transparent and always be sure about keeping your independence. Don't engage in irrelevant activities for funding. There might be shared purpose and shared interest but sometimes also there's difference in interest and funding might be provided for something that you don't really want to do. For example, typical thing is awareness campaigns. Think about whether this is really in your interest or whether it's in somebody else's interest to do that. So do the things that are relevant for your community and talk with potential sponsors about it but don't engage in stuff that you would just do for funding even though you think it's not so relevant. And like I said, dependence is important, losing your independence by being dependent on the goodwill of one specific company or one specific funder. It might also be a public funder is difficult. And of course, read the legal agreements clearly. There's usually some tricky bits in the contracts that you get. For example, in terms of liability. So if something goes wrong, are you liable? Are you personally liable? Is your organization liable in an unlimited way if you have a collaboration agreement or intellectual property? Are you still owners or do you have to transfer ownership on things that you generate? So be careful with legal agreements and WICAN, for example, has provided guiding principles on reasonable legal agreements. And you can probably look at that document which is on the WICAN website, which MP has actually coordinated as a project that can give you some guidance on fair terms. Then I'm just going to highlight some of the do's and don'ts in the sensitive nature of pharma funding. And first of all, always think, reflect how they would see you in collaborating with them. It's very important to be a professional collaborator. So you're protecting the integrity of your organization and the privacy of patients. And I think nobody would doubt that you should do that. Show your willingness to cooperate, not just withdraw funds, they are not an ATM where you can withdraw money, they're a partner and they fund you for a purpose. And that's why you're willing to cooperate with all the boundaries. Keep your promises, be a reliable partner, keep your partner updated and provide continuous reports about the project and have one contact person on your side. And that's sometimes confusing because of course, if your postpatient organization grows, you might have a volunteer working on this, a volunteer working on that, a staff member working on that, but it's very important that they all come together, that there's a single person that knows about all projects. Be professional, be prepared for meetings and also treat your funders equally. So if funders get the impression that you have a preference for one over the other, even though they're all providing the same level of support to a project, they might probably wonder. And that's why that's very important. And think about transparency and transparency not only means that you're transparent as a patient organization, the other side needs to be transparent too. If they support multiple organizations in your disease space, they should be transparent if they work with other organization in your disease space and tell you about this, that you don't find out somewhere. And of course, watch the rules. I'm going to speak about rules later on a bit and also take care of data protection if you generate evidence or if you get a personal data. So be careful about those GDPR doesn't stop you to do projects, but you need to be very aware about the privacy and how you store data, how you record data, how you store data and who has access to the data, for example. And of course, be self-confident. I mean, your contribution, your role, your organization is extremely important. Do not make yourself too small. You as a patient and patient organization and patient advocate have a lot to offer and your advice, contribution and time is valuable. And like I said earlier on in numbers, and there's this whole discussion about fair market value, which I cannot cover in detail today, but you need to think about your own value when you bring in time. And just because you're volunteering for the patient organization doesn't mean you need to volunteer in projects overall. So what are the don'ts? Be careful about exclusivity. You shouldn't be, and sometimes we see these things that patient organizations are asked not only to work with one sponsor or not to do the same things with multiple companies. That's against your mission. Don't be exclusive to any single company in your disease space. You can of course have like an initiating sponsorship or you can actually highlight who's actually set up the program with you even though you have multiple sponsors, but be very careful about exclusivity. Don't allow pressure and dependencies, especially with single sponsors, there is always the tendency of potential pressure. So be careful about keeping your independence and don't and be careful that you're not getting into a situation where you need to react to pressure. In terms of content production, I just have the suggestion that you don't let the sponsors review or correct your content. It's your content. You can talk about quality assurance principles, but don't let anyone actually interfere with the content you're generating. And don't sell outreach to your patients because you need funding. So sending on things to your membership, your members might wonder why you do that as a patient organization. Let's say outreach to your patients is not something you have to sell. It's a collaboration project that you want to do. Stay in control of your name and image. Be very careful when quoted in, for example, collaboration projects or sponsored projects in industry press releases. Make sure that any mention of your organization, of you as a person or photos of you are pre-approved by you and seen by you before they are being sent to the public. And in that sense, always be aware that communication agencies have an objective and who actually pays the sites. So they have very often a PR and marketing objective. So be very, let's say, be very aware about this when they are being involved in a project that is being sponsored. For example, if a communication agency is provided as an in-kind contribution by a sponsor to one of your projects. So finally, it's very important to know the codes of good practice to guide the relationship between patient organizations and industry. I'm just highlighting three of them. Of course, there are many more. There's the FPR code of practice on the relationship between pharma and patient organizations. You can see the link here. And this one is really important because all pharma companies actually need to actually follow that. And there's a lot that they actually look into when they define collaboration projects or sponsorship that is defined in the code of practice. But sometimes also I have the experience that they say it's not allowed by the FPR code of practice. But if you look into the code of practice there's nothing like that in there. So it's always good to know about the code and also about the similar national codes of pharma association to know what is really in there and what is just the interpretation of those codes. Then secondly, patient organizations in the early 2000s including Eurotus and ECPC and others and EPF have actually agreed on a code of practice between patient organizations and the healthcare industry. So that was let's say like the FPR code but drafted by patient organizations. And it's important to know that because it gives some guidance especially in terms of joint communication, press releases and funding which are quite helpful sometimes to refer to to say these are the rules we're following them. And then of course your party guidances there are a couple of your party guidances when you're working with companies in the area of R&D that gives you some indication how you can work with companies with regulators and health technology assessment bodies. This is not a complete list. Every country has additional codes. Every company has their own internal codes of practice and compliance rules. So it's always helpful to know the rules because then you say, then you know where the boundaries are and where the areas are where you can negotiate. Thank you so much for all your attention and I'm very happy to take your questions now. So back to Tamas.