The Rare Fair presented by The Dash Alliance

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The Rare Fair presented by The Dash Alliance The Rare Fair is the original 100% virtual event for the rare disease community.

We were thrilled to welcome Team IMPACT to and Rare Fair Junior! Attendees had the chance to hang out with elite athle...
03/10/2023

We were thrilled to welcome Team IMPACT to and Rare Fair Junior!

Attendees had the chance to hang out with elite athletes and make lifelong memories.

Team IMPACT matches children facing serious illness and disability with college sports teams, creating a long-term, life-changing experience for everyone involved.

We would like to thank them for their amazing booth and participation in our event!

Ireland of taught our inaugural Non-Profit Workshop, leveraging her 30+ years of experience as an international non-pr...
03/10/2023

Ireland of taught our inaugural Non-Profit Workshop, leveraging her 30+ years of experience as an international non-profit leader to help other non-profit leaders develop an action plan for their organizations.

In 2024, this workshop will be hosted quarterly in RTP, NC. An online version will also be available on our learning platform early next year - stay tuned for registration details!

Surprise Session! Throughout The Rare Fair we had Fred the Zebra come out during lunch, exhibitor breaks and even had hi...
03/10/2023

Surprise Session!

Throughout The Rare Fair we had Fred the Zebra come out during lunch, exhibitor breaks and even had him sit in on some sessions!

On Rare Fair Jr. he took pictures with kids, played with bubbles, and danced!

On day two of our event Matt Giordano of Krystal Bio shared exciting updates in the world of , discussing progress made...
03/10/2023

On day two of our event Matt Giordano of Krystal Bio shared exciting updates in the world of , discussing progress made for patients.

Alina Kuderska, CEO of Sparkies, guided a soothing yoga session at Rare Fair Junior for attendees. The class centered on...
01/10/2023

Alina Kuderska, CEO of Sparkies, guided a soothing yoga session at Rare Fair Junior for attendees. The class centered on breathing exercises, providing a great opportunity to discover how to use yoga to reduce tension.

Oie Osterkamp, CEO of the Ronald McDonald House Charities of the Triangle, presented our day one keynote on the topic of...
01/10/2023

Oie Osterkamp, CEO of the Ronald McDonald House Charities of the Triangle, presented our day one keynote on the topic of "What Do You Do?".
Ronald Mcdonald House Charities of the Triangle offer a home away from home for ill children and their families.

Carrie Hodgin gave an inspiring keynote address, "Purpose in the Pain", about her 19-year struggle with . Through her a...
01/10/2023

Carrie Hodgin gave an inspiring keynote address, "Purpose in the Pain", about her 19-year struggle with . Through her advocacy efforts, Carrie has been a huge help to other women facing the same diagnosis and is a powerful presence in the community. Our sincere appreciation to Carrie for her moving words and her willingness to open up.

During the Rare Fair Junior, we had the awesome opportunity to meet Phoebe the therapy dog! She was such a sweet dog and...
01/10/2023

During the Rare Fair Junior, we had the awesome opportunity to meet Phoebe the therapy dog! She was such a sweet dog and was such a hit!

Big thanks to Judy Gibbs and Therapy Dogs International for sharing Phoebe with us.

All eyes are on today for but we’re still celebrating the amazing fellows who joined us for to support kids livi...
30/09/2023

All eyes are on today for but we’re still celebrating the amazing fellows who joined us for to support kids living with . We were also honored to have the inimitable Creed and his mom join to talk about their unique relationship supporting each other on and off the field.

We had the pleasure of having Dr. Brian Eichner, the Director of Complex Care at Duke Children's Hospital, with us durin...
26/09/2023

We had the pleasure of having Dr. Brian Eichner, the Director of Complex Care at Duke Children's Hospital, with us during a meaningful discussion of "Longitudinal Care of Pediatric Patients with Complex Diseases - From Symptoms to Diagnosis and Beyond". His expertise in pediatric patient care from physical to mental health, is immensely valuable to the rare disease community worldwide.

It's hard to believe it's only been two weeks since we welcomed attendees to the 5th annual Rare Fair in RTP!Big thanks ...
25/09/2023

It's hard to believe it's only been two weeks since we welcomed attendees to the 5th annual Rare Fair in RTP!

Big thanks to Liz Jalazo, MD, of UNC Chapel Hill, Sigma Mostafa, PhD, of KBI Biopharma, and Melissa Pool, LPN, who joined us to discuss the fast-paced growth of the RTP area with respect to rare disease diagnosis and treatments.

and joined us at to discuss the importance of transition plans for patients moving from pediatric to adult care. Che...
20/09/2023

and joined us at to discuss the importance of transition plans for patients moving from pediatric to adult care. Check out the HCNP site for information on the programs they are rolling out to support patients and families.

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