AllStripes

10/23/2023

PicnicHealth announced the acquisition of AllStripes, a platform dedicated to generating evidence about the rare disease community. This strategic consolidation establishes PicnicHealth as the leading patient-centric evidence generation partner within a rapidly evolving life sciences landscape.

10/23/2023

Today we are excited to announce that we are joining forces with PicnicHealth, a company that shares our vision of putting patients at the core of research.

PicnicHealth and AllStripes’ patient-centric model enables a deeper view of each patient's health while reducing the challenges of traditional site-based studies. By joining forces, we’ll continue the work of harnessing the power of patient data to shape the future of evidence generation.

From the bottom of our hearts; thank you to all our partners and supporters for being a part of our journey and our important mission. We are excited to continue our work within PicnicHealth to put patients at the center of research.

Read the full announcement here:

PicnicHealth announced the acquisition of AllStripes, a platform dedicated to generating evidence about the rare disease community. This strategic consolidation establishes PicnicHealth as the leading patient-centric evidence generation partner within a rapidly evolving life sciences landscape.

05/26/2023

Today is LGD Awareness Day, a day to raise awareness of lymphangiomatosis (complex lymphatic anomalies) and Gorham's disease. To help in these efforts, we are excited to share the final round of data insights from our complex lymphatic anomalies (CLA) and PIK3CA-related overgrowth spectrum (PROS) research cohort!

This data which covers demographics, diagnosis, symptoms and more was collected from 123 CLA and PROS patients and analyzed by the AllStripes Research Team.

Thank you to the patient advocacy organizations who helped make this work possible: CLOVEs Syndrome Community, GOPI3Ks, WonderFil smiles - a Facial Infiltrating Lipomatosis Community and Lymphangiomatosis & Gorham's Disease Alliance.

05/23/2023

Today, May 23rd, is International GM1 Gangliosidosis Awareness Day! We want to share some information about this rare condition to help in the community’s awareness raising efforts.

GM1 gangliosidosis is an inherited lysosomal storage disorder that destroys nerve cells in the brain and spinal cord. Researchers have classified the condition into three major types based on the age when symptoms first appear: infantile (type 1), juvenile (type 2) and adult onset or chronic (type 3). Type 1 appears around the age of six months and is the most severe. There is currently no effective treatment for GM1 gangliosidosis.

Learn more about to support the GM1 community today and every day on Cure GM1 Foundation's website: https://curegm1.org/international-gm1-gangliosidosis-awareness-day

GM1 Gangliosidosis, an inherited lysosomal storage disorder damages nerve cells in the brain & spinal cord. DONATE NOW to help find a cure to this disease.

05/21/2023

Two of the rare conditions for which we have research programs, Morquio A and propionic acidemia (PCCB subtype), have been selected by the Foundation for the National Institutes of Health (FNIH) to be part of its Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium (AMP® BGTC) clinical trial portfolio. Read more about what this means here: https://fnih.org/news/press-releases/foundation-national-institutes-health-announces-selection-eight-rare-diseases

New approach aims to make clinical trials for gene therapies more efficient, less expensive, and more accessible to patients with rare genetic diseases

05/17/2023

Today is World NF Day. NF refers to neurofibromatosis type 1 and type 2, genetic conditions that cause tumors to grow on nerves throughout the body. Children's Tumor Foundation is working on their awareness campaign to ‘Make NF Visible.’ Learn more here: https://www.ctf.org/get-involved/make-nf-visible #

Help us make sure the world knows about NF and sees the people who live with it.

05/16/2023

May is Cure PSP Month of Awareness. We asked our AllStripes progressive supranuclear palsy (PSP) Ambassadors to share what they wish more people knew about PSP. Here is what they had to say.

05/15/2023

It’s Mental Health Awareness Week. Research has shown that anxiety and depression are more common among people impacted by rare disease.

However, a study conducted last year by BCM Health Services Research found that out of 1,800 rare patients and caregivers living in the UK, less than 50% were asked by healthcare professionals about their mental health or emotional well-being. https://www.cslbehring.com/vita/2022/mental-health-and-rare-diseases

On World Mental Health Day, we look at a new study from the United Kingdom that queried more than 1,000 rare disease patients about how their needs were being met.

05/10/2023

Abbey Hauser is a young adult living with classical Ehlers-Danlos syndrome (cEDS). Learn more about Abbey’s journey with transition of care and becoming the captain of their care team. https://nihrecord.nih.gov/patient-rare-disease-navigates-becoming-captain

​“My first memory of rare disease is one filled with fear and uncertainty,” said Abbey Hauser, a young adult rare disease patient and advocate, who shared her story during NIH’s Rare Disease Day.

05/09/2023

Cystinosis is a rare lysosomal storage disease caused by pathogenic variants in the CTNS gene. Thanks to advancements in treatment, individuals with cystinosis are able to experience adulthood. Check out this article by cystinosis patient advocate, Rebekah Palmer, about the importance of listening to the voices of adults impacted by rare disease. https://patientworthy.com/2020/10/30/living-with-a-disability-an-adult-patients-experience/

Rebekah, living with cystinosis, talks about the challenges of being an adult rare disease patient.

05/05/2023

Gene therapy is being investigated as a treatment for many rare genetic diseases and is a source of hope to many in the community. However, it’s important to acknowledge the patients and families who don’t have happy endings, and remember their valuable contributions to advancing research.
https://eu.usatoday.com/story/news/health/2023/04/24/gene-therapy-rare-disease-alissa-feldborg/11665320002/

Alissa Feldborg, a 3-year-old with an ultra rare genetic disease called Sandhoff, died this month after participating in a gene therapy trial.

05/03/2023

Caroline McMorrow was diagnosed with the rare autoimmune disease dermatomyositis. Today she is a health and science content strategist, and describes herself as being incredibly passionate about democratizing health information. Take a look at her recent interview in Christine McHugh’s Rungs of Learning blog: https://www.christinemchughconsulting.com/post/the-rungs-of-learning-with-caroline-mcmorrow-health-science-content-strategist

Caroline McMorrow has been a deep thinker since she was 8 years old when she was diagnosed with a rare autoimmune disease. She turned her curiosity inward and to documentaries to absorb as much as she could about science. A passion to democratize health and wellness information was born and led to h...

05/02/2023

May is designated as the awareness month for many rare diseases including progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS), Huntington’s disease, cystic fibrosis, Ehlers-Danlos syndrome and more. Throughout the month, we will be supporting the awareness-raising efforts of these communities and sharing information and resources. https://www.allstripes.com/blog/raising-awareness-for-rare-one-day-at-a-time

Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families.

04/29/2023

Today is Undiagnosed Day, a day to celebrate those around the world living with an undiagnosed disease and to honor those who lost their lives. According to Wilhelm Foundation and Undiagnosed Diseases Network International (UDNI), there are three types of undiagnosed individuals:
- The ones who have a rare disease but have not been diagnosed yet
- The ones who are misdiagnosed
- The ones who have a disease not yet discovered by medical scientists

Learn more about this year’s Undiagnosed Day campaign: https://www.undiagnosed-day.org/

Undiagnosed Day is to spread awareness and celebrate all living with an Undiagnosed Disease and their loved ones

04/27/2023

“After those 15 days of hospitalization, doctors and testing across the two facilities, they came up with a diagnosis of psychosomatic illness. It was all in my head, apparently.”

Read about Jerry Williams, founder of Myositis Support and Understanding - MSU, and his journey to have his pain taken seriously and receive an accurate diagnosis. https://www.allstripes.com/blog/financial-cost-rare-disease-dermatomyositis

As the founder of Myositis Support and Understanding Association (MSU), I’ve seen and experienced how far-ranging the impact of living with a rare disease like dermatomyositis can be.

04/25/2023

Today, April 25, is National DNA Day! We created these slides with information on the history of National DNA Day, the discovery of the DNA double helix structure and the Human Genome Project. We hope you learn something!

04/24/2023

Our team member, Mackenzie Abramson, shared her story about living with multiple rare and chronic illnesses on the On One Condition Podcast. On the episode, she shares about her arduous journey with getting accurate diagnoses, how she manages day-to-day life symptoms, the importance of balancing medications and their potential side effects and more. Listen here: https://ononeconditionpodcast.com/episodes/episode-07-mackenzie-abramson-ehlers-danlos-syndrome

Mackenzie knew something was wrong when two different breaks wouldn't heal properly. However, it took multiple opinions before a doctor recognized the symptoms of Ehlers Danlos Syndrome. She explains how it affects her body, her energy levels and her mental health. She also talks about two other con

04/21/2023

April is National Stress Awareness Month. Put simply, being a rare disease patient and/or caregiver can be incredibly stressful. What are your top tips for managing stress?