8 Highlights From the Global Genes RARE Patient Advocacy Summit

By PicnicHealth

Oct 12, 2021 • 3 min read

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Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

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

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

We know that every person's story is unique and deserves to be heard.

Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association.

1. Save The Top-10 List

Download this list to save onto your phone or print it out for your fridge!

2. Keep an Eye on These Test Results

Download this poster to save onto your phone or print it out for your fridge!

3. Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

4. Pre-Appointment Worksheet

Prepare for your loved one's next appointment.