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ONCE UPON A GENE - EPISODE 201\nA Rare Collection - Five Advocacy Aces Share Their Conference Commandments\nEPISODE HIGHLIGHTS\n\nMelissa Hioco, STXBP1\nDO:\n\nOffer a family hospitality room where parents can see the broadcast and stay involved in the conference.\n\nProvide sibling spaces and make them feel special.\xa0\n\nSpend the extra money to provide a buffet dinner and a kid's buffet with kid-friendly food.\n\nAsk for discounts on everything.\n\nFind a local AV company who will work within your budget.\n\nCreate sponsorship tiers and ask for sponsorship.\n\nProvided one-on-one genetic counseling to families at no cost.\n\nProvide social opportunities for families to connect with researchers.\xa0\n\nUtilize an event center with a hotel for accessibility.\xa0\n\nResearch if a city or state has incentives available when holding events there.\n\nDON\u2019T:\n\nOffer childcare because it's a liability.\n\nProvide a plated dinner because it's logistically complex.\n\nAccept the initial quote you're provided without trying to negotiate costs.\n\nUse the hotel's AV company because the cost will be higher.\n\n\nTrish Flanagan, HNRNPH2\nDO:\n\nInvite not just impacted families to your event, but also the researchers carrying out studies about your rare disease.\xa0\n\nPoll your community about event location, dates that work best, and discussion topics.\xa0\n\nProvide speakers with plenty of notice when inviting them to a conference.\xa0\n\nMake sure your event space adequately supports the patient and families' needs.\n\nBe transparent about the cost, inclusions and exclusions of the event.\xa0\n\n\nDON\u2019T:\n\nDon't leave the research team to organize and schedule patient assessments without your input.\xa0\n\nDon't overlook having an interpreter and special equipment that may be needed.\n\n\nAmy Fenton Parker, BDSRA\xa0\nDO:\n\nIf your budget allows, utilize a professional conference planning team.\n\nInclude a family reunion reception or party so families can reconnect.\n\nSchedule separate break-out sessions for moms, dads, siblings, and other caregivers.\n\nUse a technology provider who will make suggestions for the best outcomes and to make your conference dynamic.\n\nExplore pre-recorded sessions and livestreams.\n\nOffer a breakfast buffet so guests start their day off right.\n\nProvide trained professionals for childcare and make parents aware of the offering.\n\nTake advantage of area professionals who can offer services at the conference.\n\nCreate a planning committee to brainstorm ideas and help on the day of the event.\n\nUtilize your board to assist with speakers\n\n\nKara Kilroy, JdVS\nDO:\n\nMake space for families to connect and share.\xa0\n\nManage volunteers well, meeting with them in advance to communicate plans and coordination.\n\nSpend money on AV to ensure you have the right set-up in-person and also capture recordings and/or livestreams.\n\nSit with families and take everything in, enjoying the moment and appreciating all your hard work.\xa0\n\nHave a planning committee.\n\n\nDON\u2019T:\n\nDon't expect perfection and be ready to roll with changes and pivot.\n\nIf you provide childcare, ensure you have options for different age groups and different needs so parents get the most out of their attendance.\xa0\n\n\nAshley Point, KdVS\nDO:\n\nRecruit volunteers.\n\nFind a host family in the local area to accept shipments, recommend local services and companies and connect you with volunteers.\n\nWork with an event site company who understands your needs and who can negotiate costs on your behalf.\xa0\n\nFundraise, fundraise, fundraise. Ask, ask, ask.\n\nSet a budget early, but stay flexible.\n\nSet a rough agenda based on what's important to your community.\n\nBe sure to allow for time for families to gather together and add breaks during the event.\xa0\n\nLINKS AND RESOURCES MENTIONED\nSTXBP1\nHNRNPH2\nBDSRA\nJdVS\nKdVS\nONCE UPON A GENE - EPISODE 200 - Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens