Rare Life
October 12, 2021

8 Highlights From the Global Genes RARE Patient Advocacy Summit

Featured image
Photo by Andrew Neel on Unsplash.
A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.

Late last month, AllStripes sponsored 13 of our AllStripes Ambassadors to attend the Global Genes RARE Patient Advocacy Summit. This group of community members affected by rare disease networked, attended panels and chats and took to social media to share their insights. To learn a little bit more about what this was like, check out a roundup of these AllStripes Ambassadors’ takeaways below.

1. The rare disease community is vast

Attending the RARE Patient Advocacy Summit is a humbling reminder of how vast the rare disease community is and how important it is to connect and learn about other diseases that could relate to your own. @_allstripes #AllStripesAmbassador #GGSummit #raredisease#ALD

— Olivia Viola (she/her) (@theoliviaviola) September 28, 2021

2. Listening to others’ stories is powerful

I loved hearing @MadisonMcLaugh love for her disabled sisters & saying that she often the friend-mom carrying first aid. I carry that & I am the disabled person. Never thought a well known actress would be very honest in her talk at #GGSummit #AllStripesAmbassador

— Maria (@Citywithchair) September 30, 2021

3. Collaboration and support are essential

One of the coolest parts of a patient advocacy summit is seeing how various organizations, communities, and individuals come together to collaborate and support one another’s initiatives.

We need each other. https://t.co/6RWaGnMi51

— Lindsey Johnson Edwards (@edwards_linds) September 28, 2021

4. Passionate, authentic storytelling makes a difference

Watching as #AllStripesAmbassador the authentic, passionate, & inspiring @OnceUponAGene, masterful storytelling sharing truth, raw reality of living w #RareDisease and ❤ her message: “magical healing powers can happen when we share our stories” @GlobalGenes🦓 pic.twitter.com/H48ltWFAXt

— Kimberley Steele, MD, PhD (@KimSteeleMD) September 29, 2021

5. A patient isn’t just anatomy to study

"The patient needs to be at the center of everything we do."

I'm so grateful for Dr. Charles Steward's emphasis on the patient as a person that needs to be cared for and considered in all that we do.

A patient isn't just anatomy to study. #GGSummit #AllStripesAmbassador https://t.co/0EhQVOtyuk

— Lindsey Johnson Edwards (@edwards_linds) September 28, 2021

6. Newfound knowledge can mean newfound comfort

During the @globalgenesSummit today, I learned something that made me feel a lot of comfort. I have said over and over that I am grieving the life I thought I would have. This is common for rare disease patients and care partners. There is a term for this. Ambiguous grief.

— Amy Casey (@hygienie1) September 29, 2021

7. The excitement of attending the summit

Sherman @harleysargo

As part of the AllStripes Ambassador program, I am attending the Global Genes RARE Patient Advocacy Summit! I am excited to attend as a patient impacted by CIDP, a member of GBS/CIDP foundation and a proud supporter of the AllStripes CIDP research program. #AllStripesAmbassador

— Sherman Argo (@harleysargo) September 27, 2021

8. When waking up at 4 a.m. is worth it

Attending @GlobalGenes day 2! Im surprise that I woke up at 4am to attend. I must be very excited. I'll def. catch up on sleep later. For now I love meeting other rare folks! #GGSummit #AllStripesAmbassador

— Maria (@Citywithchair) September 28, 2021

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