Collabs

DAZZLE4RARE

Boosting research

“Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed patient and community messages. Since that first August week long event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices. Every August, we will be tweeting, posting, liking, and sharing for rare disease. Now, more than ever, we have an opportunity to raise a greater awareness as a larger community. While each community has their own unique voice, concerns, and needs, by creating a larger community for one week a year, we can spread awareness together and for each other. The only barrier to doing this is the desire, not geography or funding – sharing is free. [...]”
“At RG, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. We believe that every patient deserves more out of life. Rare diseases can affect any family at any time. Rare diseases have no boundaries, whether social, economic, or geographic. We at RG understand the pain that rare disease patients and their families go through. And we care deeply about helping our patients. It’s in our DNA.”
RARE GENOMICS

Working with patients

EPILEPSY SPARKS

Bring forth epilepsy education

“Our mission & vision:

  • To positively educate humans regarding epilepsy and commonly associated illnesses

  • To narrow the communication gap between neurologists, neuropsychiatrists, scientists, researchers, and those affected by epilepsy

  • To make learning about epilepsy interesting and exciting!

  • To provide people affected by epilepsy with something positive to focus on

  • To empower people with epilepsy, and their families, and friends, through education re epilepsy

  • To encourage education about epilepsy to the general public

What we do:

  • Share up to date information on epilepsy, epilepsy research, information sources, products, art, and more

  • Bring forth epilepsy education to the world!

  • Encourage people to ask themselves questions about epilepsy and seek out answers based upon empirical evidence

  • Challenge misconceptions about epilepsy

  • Encourage effective communication between neurologists, epilepsy nurses, scientists, researchers, and those affected by epilepsy."

We have created specific reports for several rare diseases and are ready to broaden our research

Epilepsy

It is believed that 30% of the epilepsies have a genetic factor. Genes are hugely complex though. We each have up to 2 million “steps” in our DNA ladders, each of which are different in every one of our 20-25,000 genes. The Stripe2Be test simplifies your genetic complexities. Your individual reports can lead to a much quicker diagnosis of a genetic epilepsy.

We have created specific reports for several rare diseases and are ready to broaden our research

Mental health conditions

Lots of mental health conditions can be formed of several separate (but overlapping) health issues, with the causes being a mix of genetics, lifestyle, experiences, and more. Your genetic variations can’t be used to diagnose you with psychiatric illnesses but they can help to improve your understanding of contributing factors. This is why at stripes2be we combine your genetic data with your medical health records to identify correlations with any symptoms.

We have created specific reports for several rare diseases and are ready to broaden our research

Neurodegenerative conditions

There’s a huge interest in how genetics influence neurodegenerative diseases such as Alzheimer’s, Parkinson’s, Spinal Muscular Atrophy (SMA), and Amyotrophic Lateral Sclerosis (ALS). Using your genetic data, we can help identify if genetic markers can reliably identify risk of developing these diseases.

We have created specific reports for several rare diseases and are ready to broaden our research

Doctors and Associations

We strictly follow the American College of Medical Genetics (ACMG) guidelines for the development of new reports. The ACMG is the only professionally-recognized international interdisciplinary professional organization of its kind and where organizations must adhere to extremely high standards for membership.

Counseling

Don’t discover your stripes alone

Get help from a team of specialized geneticists to better understand the true potential of your genetic reports and data.
Three simple steps:

  • Choose the service you prefer
  • Upload clinical and genetic reports
  • Book the visit when is best for you