RARE Patient Advocacy Summit Kicking Off
September 12, 2022
Watch out San Diego – the rare disease community is back together, and we’re not sure you can handle the excitement heading your way!
After two years of cancellations of the in-person RARE Patient Advocacy Summit experience, more than 500 rare disease advocates will gather this week to learn, grow, and celebrate being rare together. And whether a first time attendee or veteran with years under their belt, we’re all “SO EXCITED!”
While there are more than 10,000 different rare diseases, together, 1 in 10 Americans and more than 400 million worldwide have a rare disease.
The fun isn’t just for the in-person crowd. Space was limited this year for health and safety reasons, hundreds of additional participants from around the globe will log online to watch sessions live online. And we can’t forget how important connecting online is for the community – check out the discussion and scavenger hunt/games section of the platform for some extra fun surprises this year.
That doesn’t mean there’s less of a countdown for days…or sleeps…’til the fun begins.
3 sleeps #GGSummit22— Ataxia and Me CIO 1184030 (@Ataxia_and_Me) September 9, 2022
Sadly we are unable to attend IRL, but looking virtually
After all, the virtual crowd can continue the much-loved tradition of online education in your pajamas, and won’t have to struggle with wardrobe decisions like speaker DadVocate, Adam Johnson.
It’s been quite a battle between conference prep me & clothes prep me ahead of the upcoming @GlobalGenes Patient Advocacy Summit. 😂— Adam Johnson – DadVocate (@RareDiseaseDad) September 6, 2022
This is how it normally went, right @DavidSpade?#TommyBoy #GGSummit22 https://t.co/if8KOVRsrO
The 2022 RARE Patient Advocacy Summit’s theme is at the heart of what we all do – Rare Life. Bonded Together – with sessions and tracks dedicated for rare adults, caregivers, advocacy leaders, and more. If you’ve been before, you know it isn’t just about the sessions. We know how important the connections patients, caregivers, advocates, scientists, industry…the community…makes here are, and are excited to catch a glimpse of what people are looking forward to this year.
Looking forward to coming to the #GGSummit22 to look into how I can build , grow develop the #RareDisease mens #mentalhealth group. Thanks @GlobalGenes for hosting what I know will be a fantastic event— David Ross (@mensraredisease) September 8, 2022
Off to San Diego for @MyotonicStrong and @GlobalGenes Conferences for a project on Sleep-in-Rare disease for @trendcommunity— Matthew Horsnell (@matthorsnell) September 9, 2022
Face of exhaustion hiding enthusiasm. Looking forward to connecting with friends @AvadelPharma @HarmonyBio #narcolepsy #SleepPeeps #idiopathichypersomnia pic.twitter.com/RjS81EeVf9
I cannot wait to talk about siblings and share our books, coloring pages and worksheets for siblings of kids with rare diseases at the #GGSummit22 #Genechat pic.twitter.com/MQAVg5015m— Abby Turnwald (she/her) (@PedsGCAbby) September 9, 2022
Excited to meet #raredisease leaders, specialists, researchers & innovators in providing & developing novel treatments at @Global Genes #ggsummit in #sandiego next week. Let’s to talk about ways to collaborate on research & programs to end #CGD and support female #carriers pic.twitter.com/wrFtYlf3gt— The CGD Association of America (@CGDAofAmerica) September 9, 2022
I can't wait to network with and form bonds with my rare fam! See you all there!— Robin Powers-keynote, panelist, educator, advocate (@RobinPo54612760) September 11, 2022
We all wear multiple hats – advocate, patient, parent, sibling, care partner, healthcare provider, advocacy leader, author, volunteer.
Many hats too!— Mary Morlino (@MaryMorlino) September 10, 2022
– #sarcoidosis Advocate @StopSarcoidosis
– @GlobalGenes RARE Concierge Patient Services Manager
– @MarylandRare Cofounder
– #GGSummit – Moderator, Panelist
Come say ‘Hi’ in the RARE Concierge Lounge or #rarediseasewalkabout
And whether your life looks different than you thought it would…
3+ years ago, I spoke at an education conference in San Diego.— Adam Johnson – DadVocate (@RareDiseaseDad) August 23, 2022
Then #RareDisease altered my life. I thought my presentation days were over.
3 weeks from today, I’ll take the stage as a moderator, speaker, & podcaster at the #GGSummit22 in San Diego.
Emotional. Poetic. Awesome. pic.twitter.com/e2ZV3AFMMD
…or you’ve been on this journey for a long time and suffered great loss…
Having lost 2 family members to different rare diseases looking forward to hearing this important keynote speaker at the #GGSummit22 #RareDisease https://t.co/JHcDGwxM8v— David Ross (@mensraredisease) September 9, 2022
…there’s a place for you here.
We’re inspired and motivated by the stories and experiences of the community joining us online and in person. When you’re in this rare community, you quickly realize you’ve found your place. Your people. And that everyone around you has a one-in-a-million story to share. A story of struggle, triumph, pain, support, loss, growth, laughter, tears, and strength. A story of hope. And that’s why events like these are important.
Because this rare life is better when we’re bonded together.
We hope you’ll join us for the 2022 RARE Patient Advocacy Summit. Registration is still open for online participation here.
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