We invite you to become a part of our Healing Genes Community.
Do you have an issue, words of wisdom, or have you discovered something others should know? Please let us know. We have great ways to connect:
Would you like to write a guest blog for us? You’ll find our “rules” (which we hope make sense) and a form to fill out that allows you to submit a blog post.
We invite you to share information and stories you’ve found with us. We also will be so grateful if you would share our posts with others who may find them helpful, motivational, thought-provoking, and comforting.
Healing Gene Ambassadors are not paid.
As a Healing Genes Ambassador, you will be our eyes and ears on the Internet. When convenient, as you’re reviewing online information, you simply email us a link to a website, video, or other online information you believe we should review.
You also may ask us to help frame talking points or a message you want to use to set the record straight about cell and gene medicine, gene editing, tissue engineering, or regenerative medicine.
Together, we will seek to ensure all have more convenient access to information and can make informed decisions about cell and gene medicine.
Meanwhile, we ask that you commit to respecting the dignity of all our families as well as helping us share up-to-date and accurate information.
Interested in being an ambassador? Please provide us with some basic information, and we’ll connect by email. We look forward to having you join the team!
This website provides an archive of personal stories. You can browse the story archives, share your story and browse current news.
GenomeConnect is an online patient registry where you can securely share genetic and health information that can be used by researchers and healthcare providers to improve care for future patients. This site also gives you the option to connect with others who have had similar genetic test results or diagnoses, learn about additional research opportunities, and receive updates about their genetic test results.
You can use MyGene2 to connect with other families who have the same condition or mutations in the same gene. Families can then share information and offer support. You can also connect with researchers. If you’re interested in being a citizen scientist, this site is worth checking out.
This site provides posts and discussions for everyone who is involved with a rare disease. You can find a community that shares insight into a specific disease or condition, you can join general discussions on rare diseases and what’s new, provide or seek technical feedback, and even delve into an undiagnosed disease issue.
RareShare is a rare disease social network that part of the Rare Genomics Institute. Its designed to become a place where you can sympathize, celebrate and share experiences and expertise with others, including researchers. The site also has news, podcasts and other information.
Articles that Celebrate Moms!