A Rare Collection - Five Advocacy Aces Share Their Conference Commandments

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

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. 

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

ONCE UPON A GENE - EPISODE 201

A Rare Collection - Five Advocacy Aces Share Their Conference Commandments

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

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. 

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