- UBC Rec presents the third annual Lace Up for Kids, a skate-a-thon in support of the Rare Disease Foundation research fund at B.C. Children's Hospital, Thursday, Nov. 25 from 6 p.m. to midnight at UBC Thunderbird Winter Sports Centre. Info: www.laceup.ca.

When participants in the third annual Lace Up for Kids take to the ice Thursday, they'll be doing so in support of families facing the inherent uncertainty of a rare disease diagnosis.

The skate-a-thon is presented by members of UBC Rec and raises funds for the Rare Disease Foundation research fund at B.C. Children's Hospital Foundation.

"It's kind of a three-way partnership," says Rare Disease Foundation board chairwoman Isabel Jordan.

The Rare Disease Foundation was created in February 2009 and has two major focuses.

"One is parent and family support for families faced with a rare disease diagnosis," she says.

Unlike more common diseases where families can turn to specific organizations and specialists tailored to their illness, those families faced with a rare disease often have nowhere to go for help.

The foundation estimates one in 10 people in Canada are affected by a rare disorder, primarily seeing the onset of symptoms in childhood.

"That's a lot of people, that's a lot of families in grief," says Jordan, speaking from firsthand experience as her own son has an undiagnosed, unique disorder.

"There's no where to go for support or for help, so we wanted to provide that for families," she says.

Among their services, the foundation runs a Vancouver area parents group.

"When we started there were quite a few doubts from a lot of quarters, 'what are people with completely different diagnoses going to want to do for each other or going to want to say to each other?'" says Jordan.

However, they quickly realized that while the members each face different challenges, a camaraderie exists.

"We all share the same social issues, the same emotional issues (and) the same desire to make it better for everybody with a rare disease that's put in the position we've been put in," says Jordan.

"Most of us are living with daily uncertainty about our children's health," she adds.

This realization is encouraging them to expand into other areas and similar groups are being launched in Ottawa and Toronto and the foundation is looking to start more.

The second focus of the foundation is treatment-focused research, making it the perfect choice for UBC, says Caitlin Brenchley, events co-ordinator for UBC Rec.

According to Brenchley, what attracted their organization to the Rare Disease Foundation is the fact that those involved are part of a relatively small and local community that they get to impact directly. "Being that a lot of UBC students participate and do a lot of the fundraising around this event, it's kind of neat that the funds that are raised, the Rare Disease Foundation puts towards their microgrant program to which researchers can apply to receive grants to study various diseases, or children or cases that they're presented with," says Brenchley. "So it ultimately goes back to the lab where lots of our students who are in sciences and other fields like that are learning and experiencing right now."

This year's event is being held Thursday, Nov. 25 at UBC Thunderbird Winter Sports Centre, starting at 6 p.m.

Participants, as teams or individuals, endeavour to collectively skate 25,000 laps and raise $100,000. A number of off-ice activities have also been organized, like live entertainment, making it a family-friendly affair.

Last year's saw approximately 700 people participate and raised more than $64,000.

The event proves incredibly meaningful to the foundation, showing them the support that exists for them in the community, says Jordan.

"To go to an event where there were several hundred people there to help kids like our kids and to support our cause, it was an incredibly emotional experience," she says, of last year. "It felt like finally somebody out there cared and that maybe things were changing for the better."

For more information on the Rare Disease Foundation, visit www.rarediseasefoundation.org.