“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, Person with FIL
“I’m excited that this partnership will enhance the research needed for a better quality of life for the CLOVES Community.”
– Lindsay, Person with CLOVES
“By partnering with AllStripes, CLOVES patients are taking part in the priceless progression of better understanding and treating CLOVES.”
– Lindsey, Person with CLOVES
“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, Person with CLOVES
“I joined AllStripes to be a better advocate for Lincoln, and 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 to not only continue to learn more about PROS, but to also encourage others, share experiences, & remind others that there is always support within the rare disease network.”
– James, Person with PROS
“I am excited about the partnership with AllStripes, because we are contributing to accelerating treatment options for our son and the whole community!”
– Jenny, mother of a Person with CLOVES
“We are excited to be partnering with AllStripes as this means that PROS is finally being recognized & as a rare community, who are stronger together, we can make a huge difference to research & potential treatments for those living with PROS, now & in the future.”
– Mandy, Person with PROS
“You have the power to advance rare disease treatments.”

You can accelerate drug development in 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, or your child’s, de-identified medical records to multiple research efforts for PROS. You can also contribute on behalf of a loved one in their memory. We collect and de-identify all records, which you can access at no cost.

Join research
0/65 research participants

Help this community hit the research goal by sharing with your network!

Who’s involved?

WonderFIL Smiles

WonderFIL Smiles

GoPI3Ks

GoPI3Ks

CLOVES Syndrome Community

CLOVES Syndrome Community

How sharing your journey powers progress

  • Jumpstart new research for your rare disease

    Your (or your loved one’s) medical records contain clues that can lead to new treatments.

  • Determine important symptoms to target

    AllStripes researchers learn from patient records what would truly improve quality of life.

  • Speed up development of treatments

    Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.

  • Be part of multiple research efforts, without leaving home

    Your community’s de-identified records can advance multiple treatment studies.

BENEFITS TO JOINING

What you’ll get along the way

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

Access your records

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

See how your rare disease journey compares to others with your condition, and what’s helping.

Learn from your community

See how your rare disease journey compares to others with your condition, and what’s helping.

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Track your impact

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Join now

Our work with PROS research

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, including the lymphatic and vascular systems, bones, fat, and central nervous system, depending on the specific PROS condition. Overlap between conditions can be seen. The degree of severity can range from mild to severe and can cause pain, difficulty with mobility, complications of the blood, loss of function in body systems, and an array of neurological complications.

Specific PROS conditions include the following: CLAPO syndrome, CLOVES syndrome, facial Infiltrating lipomatosis (FIL), fibroadipose hyperplasia (FAO/FH), fibro-adipose vascular anomaly (FAVA), hemihyperplasia-multiple lipomatosis syndrome (HHML syndrome), hemimegalencephaly (HME), Isolated Lymphatic Malformations (ILM), Klippel-Trenaunay syndrome (KTS), and megalencephaly-capillary malformation syndrome (M-CM/MCAP). Some patients are diagnosed with a specific PROS condition, while others receive an umbrella diagnosis of PROS.

Treatment for a PROS condition may involve multiple surgeries, drug treatment, interventional radiology procedures, special education, and speech and physical therapies.

  • Jumpstart
  • Accelerate
  • Insights

The PROS program is in the jumpstart stage.

Be part of research

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Impact research

3. Impact research

Power multiple research projects at once by contributing your de-identified data

Join now

Still have questions?

Check out our FAQs

Our values & principles.

1
Patients own their data

We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.

4
Inclusiveness in the community

We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.

5
Driving forward therapeutic development

Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.

Be part of research

AllStripes Research for PROS 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.