RareShare

We are sharing part 2 of our February Rare-Ed series which covers rare disease statistics! Did you know that 30 million Americans are affected by a rare disease or the average time for a rare disease patient to receive a correct diagnosis is 5 to 8 years? #RareDiseaseDay2021

The first Rare Disease Day took place on February 29, 2008. Since this day only occurs every four years on a leap year, it signifies the rarity of rare disease. Any amount donated to RG helps rare disease patients get one step closer to a cure. To donate: donorbox.org/rare-disease-da…

Rare Genomics needs YOUR help to attain the Top-Rated Nonprofit Badge for the second year in a row! Write and review Rare Genomics to share your experience with us and let your story be heard. This badge will help RG as a nonprofit. To submit a review: greatnonprofits.org/reviews/…

Birdshot Chorioretinopathy is thought to be an autoimmune disorder, affecting both eyes, causing severe, progressive inflammation of both the choroid and retina. Interested in this community? Visit both RG (raregenomics.org/birdshot-ch…) or @RareShareOrg (rareshare.org/communities/bi…).

15q 26.2 Deletion is very rare with no known causes. The 15q26.2 deletion @RareShareOrg community has 212 members. There are currently 2 active discussions helping to connect patients, health workers, caregivers and families interested in 15q26.2 deletion. bit.ly/2UeMjjN

RG's Rare-Ed has put together a special educational infographic this month about the Coronavirus. Learn about COVID-19's viral mechanism, future predictions until August 2020, and more! If you have any requests for other Rare-Ed and COVID-19 related content, comment down below.

There is a lot of upsetting news about the pandemic so be sure to give yourself a break from it . When looking for sources of information, make sure to check that the source is reliable. We recommend The CDC and WHO. CDC: cdc.gov/coronavirus/2019-nco… WHO: who.int/emergencies/diseases…

We hope during this difficult time that your families are well and that you are taking the necessary precautions to protect yourself and your loved ones. RG is a community built on helping others and you can help flatten the curve by clicking here: who.int/emergencies/diseases…

This is a difficult time for everyone. Self-quarantining and practicing social-distancing can be unfamiliar, but we’re here to celebrate your efforts and let you know to not stop what you’re doing! See why we need to keep taking these safe measures here: covid19.healthdata.org/proje…

Von Hippel-Lindau (VHL) disease is a rare inherited genetic condition involving the abnormal growth of tumors in parts of the body which are particularly rich in blood supply. Interested in this community or want to find another community? Join RareShare: bit.ly/3brX0pq

Do you or your loved one have needs which can be addressed through a medical device, monitoring, or wearable technology? If yes, then we can help connect you or our loved one to companies gifting technology through the RG RareWear initiative! Apply here: bit.ly/38UqRoJ

We are 20% of the way to our goal and by donating only $1, you can help support the rare disease community on its big day. To date, Rare Genomics has helped over 800 families and by your contribution, we can make that number grow. Donate today: donorbox.org/rare-disease-da… #RDD2020

Happy Rare Disease Day! Rare disease patients fight their disease every day. The mystery of the disease can go for many years without an official diagnosis, or coverage for needed tests and services. Today we celebrate the strength of individuals living with rare diseases.