Global Genes Rare Disease Advocacy Summit 2023 Vlog - San Diego, CA - Talks, Booths, & More

Welcome to the Global Genes Rare Advocacy Summit Vlog!

In September 2023, I had the priviledge of attending this summit from the 19th to the 21th. Unfortunately, I missed the Health Equity summit which started on the 18th preceded the Rare Advocacy Summit. This vlog takes me from the opening to closing remarks of the summit with plenty in between!

I wanted this vlog to take you on the journey of one person attending the summit. Like I mentioned, there are up to 4 events happening at once, so it is impossible to go to every talk and talk to everyone. Thankfully, @GlobalGenesProject is posting all of the talks on their YouTube channel!

I was so fortunate to attend this event thanks to a scholarship that was provided to the UDNF (Undiagnosed Disease Network Foundation) from the Barmakian Fund at the Columbus Foundation. I volunteer for the UDNF, and have had a muscle disease of unknown origin since birth.

Thank you to everyone who appeared in my vlog and to everyone that I met at the summit. It was truly a powerful and insightful event, and it fills me with hope for the rare disease community.

Below, I will put the chapter markers of the vlog:

0:00 – 1:40 Intro

1:41 – 2:54 Opening Remarks

2:55 – 4:45 We the Scientists

4:46 – 5:21 Beginner’s Guide to Community Activation

5:21 – 7:21 New Models of Patient Participation in Therapeutic Development

7:27 - 8:23 Expecting Health ( @expectinghealth6446 )

8:24 – 9:14 N-Lorem Foundation ( @nloremfoundation )

9:15 – 10:01 Rare Patient Voice ( @RarePatientVoice )

10:02 – 11:36 Horizon Therapeutics #RareIs

11:45 – 13:35 LBSL Poster ( @cureLBSL )

13:36 – 15:02 Fighting for Kaiden Foundation

15:03 – 15:48 Team Impact ( @TeamIMPACTVIDEOS )

15:40 – 17:00 RARE Champions in Advocacy 2023 Awards

17:05 – 18:34 Managing Life Without a Diagnosis ( @UDNForg )

18:35 – 19:39 Rare Genomes Project

19:39 – 20:08 wAIHA Warriors (@wAIHA Warriors)

20:09 – 22:08 Global Genes Rare Concierge ( @GlobalGenesProject )

22:08 – 22:28 – The Assistance Fund

22:29 – 25:14 Travere Therapeutics

25:15 - 25:53 PAN Foundation ( @PANFoundation )

25:55 – 27:14 Center for Precision Animal Modeling (University of Alabama)

27:15 – 28:05 pfic Advocacy & Resource Network, Inc.

28:06 – 28:28 Chosen and Created

28:29 – 29:48 flok

29:49 – 30:24 HelpHopeLive ( @helphopelive )

30:25 – 30:52 DYRK1A Syndrome International Association

30:53 – 31:31 Accessia Health ( @accessiahealth )

31:32 – 32:01 Living in the Light

32:02 – 33:29 Wellcast Project – Purdue University

33:29 – 34:15 Uplifting Athletes ( @upliftingathletes )

34:16 – 35:04 Me Prepping to be a Guest on the Insightful Moments Podcast by PTC Therapeutics

35:04 – 35:37 Project Alive – Hunter Syndrome Research & Advocacy Foundation ( @ProjectAliveOrg4aCure )

35:37 – 36:21 IGA Nephropathy Foundation ( @IgANFoundation )

36:22 – 36:49 Rare Village Foundation

36:50 – 37:34 Pfizer, SynGAP Research Fund, Patient Advocate Foundation

37:35 – 39:05 Closing Remarks & Recap