The authors page acknowledging the contributors to the Mark2Cure’s first paper is now LIVE! Please note that only users who submitted annotations or contributed feedback during the beta phase will be listed on this site. If you have been following our journey since that time, but did not contribute during this phase, thank you for your support! Please contribute annotations and feedback to Mark2Cure so we can acknowledge your work in future publications.
If you contributed during this phase, but did not complete the survey, you can still have your name added. Send an email to Mark2Cure containing the following:
- Subject line: ‘Beta participant: (your user name)’ <–This is how we verify that you contributed during the beta phase
- Email body: Preferred name <– This is what we’ll list on the site. Some users prefer to have just their username, others prefer their full name
- Email body: A Quote <– This is optional! If you did Mark2Cure in memory of someone or to raise awareness for something, you can share it here. Please try to keep your quote to 140 characters or less.
Upcoming CDG/NGLY1 rare disease event!
The Sanford Burnham Presby Medical Discovery Institute is hosting its own Rare Disease day symposium focusing on NGLY1-deficiency and Congenital Disorders of Glycosylation from February 26th to February 27th. If you participated in marking the CDG doc set or would just like to learn more about NGLY1-deficiency or Congenital Disorders of Glycosylation, you may want to register to attend. Matt Might (who is a really compelling speaker) will be presenting on the natural alliance between precision medicine and rare disease.
If you are interested in CDG or NGLY1, you don’t have to be in San Diego to learn from the great speakers they have queued up. You can register to watch the webcast of the talks. If you have or are caring for someone who has a congenital disorder of glycosylation, be sure to register as a CDG/NGLY1 Patient/Family. There is a special ‘Doctor is in’ session available to CDG/NGLY1 patients/families. Hurry, because pre-registration for that session is required by February 15th to participate in those.
You don’t have to have a rare disease to participate in many of these rare disease events. You just need to have a desire to learn or help! If you want to find an event closer to you, try this page if you’re in the US, or this one if elsewhere.
If you joined us out of interest for citizen science or volunteerism, don’t feel left out!
Rare disease day is not the only special day marked on our calendar!
Microvolunteering day is April 15th and Citizen Science day is April 16th.
We’ll bring you more information about what’s in store for these events as we get closer to them.