ONCE UPON A GENE - EPISODE 201 - Five Advocacy Aces Share Their Conference Commandments

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. 

EPISODE HIGHLIGHTS

Melissa Hioco, STXBP1

DO:

  • Offer a family hospitality room where parents can see the broadcast and stay involved in the conference.

  • Provide sibling spaces and make them feel special. 

  • Spend the extra money to provide a buffet dinner and a kid's buffet with kid-friendly food.

  • Ask for discounts on everything.

  • Find a local AV company who will work within your budget.

  • Create sponsorship tiers and ask for sponsorship.

  • Provided one-on-one genetic counseling to families at no cost.

  • Provide social opportunities for families to connect with researchers. 

  • Utilize an event center with a hotel for accessibility. 

  • Research if a city or state has incentives available when holding events there.

DON’T:

  • Offer childcare because it's a liability.

  • Provide a plated dinner because it's logistically complex.

  • Accept the initial quote you're provided without trying to negotiate costs.

  • Use the hotel's AV company because the cost will be higher.

Trish Flanagan, HNRNPH2

DO:

  • Invite not just impacted families to your event, but also the researchers carrying out studies about your rare disease. 

  • Poll your community about event location, dates that work best, and discussion topics. 

  • Provide speakers with plenty of notice when inviting them to a conference. 

  • Make sure your event space adequately supports the patient and families' needs.

  • Be transparent about the cost, inclusions and exclusions of the event. 

DON’T:

  • Don't leave the research team to organize and schedule patient assessments without your input. 

  • Don't overlook having an interpreter and special equipment that may be needed.

Amy Fenton Parker, BDSRA 

DO:

  • If your budget allows, utilize a professional conference planning team.

  • Include a family reunion reception or party so families can reconnect.

  • Schedule separate break-out sessions for moms, dads, siblings, and other caregivers.

  • Use a technology provider who will make suggestions for the best outcomes and to make your conference dynamic.

  • Explore pre-recorded sessions and livestreams.

  • Offer a breakfast buffet so guests start their day off right.

  • Provide trained professionals for childcare and make parents aware of the offering.

  • Take advantage of area professionals who can offer services at the conference.

  • Create a planning committee to brainstorm ideas and help on the day of the event.

  • Utilize your board to assist with speakers.

  • Publicize, publicize, publicize!

  • Plan something joyous to wrap up the event.

  • Survey your attendees and use the data collected to improve future events.

Kara Kilroy, JdVS

DO:

  • Make space for families to connect and share. 

  • Manage volunteers well, meeting with them in advance to communicate plans and coordination.

  • Spend money on AV to ensure you have the right set-up in-person and also capture recordings and/or livestreams.

  • Sit with families and take everything in, enjoying the moment and appreciating all your hard work. 

  • Have a planning committee.

DON’T:

  • Don't expect perfection and be ready to roll with changes and pivot.

  • If you provide childcare, ensure you have options for different age groups and different needs so parents get the most out of their attendance. 

Ashley Point, KdVS

DO:

  • Recruit volunteers.

  • Find a host family in the local area to accept shipments, recommend local services and companies and connect you with volunteers.

  • Work with an event site company who understands your needs and who can negotiate costs on your behalf. 

  • Fundraise, fundraise, fundraise. Ask, ask, ask.

  • Set a budget early, but stay flexible.

  • Set a rough agenda based on what's important to your community.

  • Be sure to allow for time for families to gather together and add breaks during the event. 

  • Provide childcare that can adequately care for medically complex kids. 

  • Be inclusive and think about attendee needs on-site.

  • Accept that everything won't be perfect, but families will find commonalities that will last a lifetime.

LINKS AND RESOURCES MENTIONED

STXBP1

HNRNPH2

BDSRA

JdVS

KdVS

ONCE UPON A GENE - EPISODE 200 - Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

CONNECT WITH EFFIE PARKS

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