I joined AllStripes because representation matters. Together, we can help build a stronger community for those living with rare conditions.
Berlange
,
PROS Ambassador
I joined AllStripes because representation matters. Together, we can help build a stronger community for those living with rare conditions.
Berlange
,
PROS Ambassador
I chose to become an AllStripes Ambassador to help empower other minority women and girls with rare diagnoses to shine.
Ikedra
,
advocate for PROS
I joined AllStripes to not only continue to learn more about PROS, but to encourage others and share experiences.
I joined AllStripes to not only continue to learn more about PROS, but to encourage others, share experiences and remind others that there is always support within the rare disease network.
James
,
PROS Ambassador
I joined AllStripes to be a better advocate for Lincoln, and to aid in research and development that can help other families with their PROS journey.
Kelsie
,
mom and advocate for the PROS community
I joined AllStripes because I want to share my story and raise awareness for CLOVES syndrome.
I joined AllStripes because I want to share my story and raise awareness for CLOVES syndrome. I’m excited to begin this journey by contributing to research and using my voice to make a difference in the CLOVES community.
Dulce
,
PROS Ambassador
I joined AllStripes to have the opportunity to connect on a global level, to know that you are never alone and that there are amazing people just like you. What a beautiful world.
Andrea
,
PROS Ambassador
We are excited to be partnering with AllStripes as this means that PROS is finally being recognized.
We are excited to be partnering with AllStripes as this means that PROS is finally being recognized, and as a rare community, who are stronger together, we can make a huge difference to research and potential treatments for those living with PROS, now and in the future.
Mandy
,
PROS Ambassador
I am excited about the partnership with AllStripes because we are contributing to accelerating treatment options for our son and the whole community!
Jenny
,
PROS Ambassador
By partnering with AllStripes, CLOVES patients are taking part in the priceless progression of better understanding and treating CLOVES.
Lindsey
,
PROS Ambassador
I joined AllStripes to connect and help patients like myself, who were born with extra color and rare abilities.
Morgan
,
advocate for PROS
I’m excited that this partnership will enhance the research needed for a better quality of life for the CLOVES Community.
Lindsay
,
PROS Ambassador
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Research participants
needed
Help reach this goal to jumpstart the research program! More participants can join at any time to make research even stronger.
The first recruitment goal has been met! But we encourage more participants to join to make this research as strong as possible.

Be part of the AllStripes program for

PROS

PIK3CA-related overgrowth spectrum

Your experience with
PROS
is important and can help researchers advance treatments for your community.
By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for
PROS
without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.

Contribute to multiple research efforts for CLOVES, FIL and other PROS conditions without leaving home.

The first research project for this program is a study with Novartis Pharmaceuticals Corporation to understand the patient journey and natural history of PROS.

By contributing your, or your child's, de-identified records, you’ll advance research and receive all your records in your secure account, at no cost.

Learn more about

PROS

PIK3CA-related overgrowth spectrum (PROS) is a group of rare conditions that cause overgrowth of various parts of the body due to mutations in the PIK3CA gene. PROS is progressive and symptoms can be present at birth or develop in early childhood. In PROS conditions, malformations may be seen in several different areas of the body.
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Benefits to joining

Power to the patients

Benefits to joining

Have a voice in research

Your de-identified records, and your input through surveys, can help guide treatment research.

Access your medical records

We collect your records, at no cost, in your secure account. View doctors’ notes and your care journey.

Learn from your community

Receive updates on your research impact.

How it works

1. Sign up

In just 15-20 minutes, create your private account, authorize us to get to work on your behalf, and share the names of your health facilities. No appointments, no uploads.

2. We get to work

The AllStripes team does the work to collect your records, at no cost, in your secure account. Access doctors’ notes you may have never seen and view your care journey.

3. Power research

Our team de-identifies your records by removing information like name and address, and analyzes your community’s data to help jumpstart or speed up new treatment research.

AllStripes FAQs for patients and caregivers

Privacy and data ownership

AllStripes Research is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation. Read more.

Access your records, drive research

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