Maybe take a look at the orphan drug act for inspiration,
https://www.fda.gov/patients/rare-diseases-fda
Ask HN: How to raise funds for rare disease research?
11–20 of 212 posts
Re: Ask HN: How to raise funds for rare disease research?
#12You should try asking on https://reddit.com/r/nonprofit or even reaching out to people at those foundations you mentioned for other diseases. I'd start with a simple campaign page with your mission, your goals, some cute pics and some way to collect donations and capture emails. There's loads of fundraising CRMs out there. Givelively is a decent one and costs nothing but there's plenty of options. Even just a Faceboo…
Thank you. I wasn't aware of a nonprofit sub on reddit. So many members. Definitely will post there.
Re: Ask HN: How to raise funds for rare disease research?
#13Hi, your efforts to better understand your daughter's diagnosis are remarkable, and appreciated. A rare disease lights a fire that's almost impossible to extinguish, you want every question answered, there often are none, but it doesn't stop you from searching anyway. Your situation resonates with me a lot, my little girl was diagnosed with another KS - Kabuki syndrome, specifically a mutation with the KMT2D gene (thanks to whole genome sequencing), which is rare, but common enough for their to be a few decent resources out there now, specifically ones like https://www.allthingskabuki.org and https://www.kabukisyndromefoundation.org which helped my wife and I better understand our daughter's diagnosis. Kabuki is multi-system affecting, often accompanied by heart disease, feeding, hearing, hypotonia, endocrine, limb/spinal/skeletal/organ abnormalities, and similar to Kleefstra, intellectual, speech, and mobility difficulties.
Your ideas all sound fantastic, and definitely on the right path, maybe reaching out to foundations of other rare syndromes may offer some help, likewise with Facebook groups, and the like. I run my own non-profit https://sterlingstrong.foundation to bring awareness to KS, CHD, isomerism, etc, and to help families during long ICU stays, and further research by donating to other research centers such as https://www.kennedykrieger.org, maybe they, or orgs like Center for Rare and Neglected Diseases https://crnd.nd.edu/directors-page may help? I wish you and your family all the best!
Re: Ask HN: How to raise funds for rare disease research?
#14Hello!
> How to raise funds for rare disease research?
I'm not a marketing expert (though I do work with rare diseases). But a good starting point might be to checkout https://www.rarebeacon.org/ There certainly is help and there are options, but as you understand finding and accessing them isn't always easy. Good luck on your journey
Re: Ask HN: How to raise funds for rare disease research?
#15I'm sorry for what you are going through and can't offer any advice pertaining to your main question. Have you heard of AllStripes (https://www.allstripes.com/) by any chance?
Re: Ask HN: How to raise funds for rare disease research?
#16experiment.com?
Re: Ask HN: How to raise funds for rare disease research?
#17I'm sorry for what you are going through and can't offer any advice pertaining to your main question. Have you heard of AllStripes ( https://www.allstripes.com/ ) by any chance?
Thank you. Yes, idefine collaborates with All Stripes. Hopefully soon we will pass 100 registered participants there. Very important work. https://www.allstripes.com/program/kleefstra
Re: Ask HN: How to raise funds for rare disease research?
#18[deleted]
Re: Ask HN: How to raise funds for rare disease research?
#19experiment.com?
First time I heard about this site. Maybe we can use this for preliminary research requiring small funds. I'll study this.
Re: Ask HN: How to raise funds for rare disease research?
#20You might be eligible for some of the grants made by CZI for their rare as one program focused on supporting patient driven research for rare diseases.
https://chanzuckerberg.com/science/programs-resources/rare-a...