Rare Genes Summit

I

Imogene

Administrator
I am arriving in LA California for the Rare Genes Summit put on later this week by Global Genes:
http://cysticfibrosis.com/rare-patient-advocacy-summit/

What will I learn? I am asking as I think of our community. You are the gateway for personalized medicine. We have been together here at CystiFibrosis.com for 20 years...but many families I will meet are just beginning this journey or may have one of the 7000 diseases where there are no medications and only a few people have ever been diagnosed with their particular disease.

One thing I know very well is that our community has welcomed people in search of a diagnosis with open arms...answering questions..understanding their fears and reaching out to them with empathy and love.

I carry you in my heart this week!
Salt and Light,
Imogene
 
I

Imogene

Administrator
I am back from the Summit and just reviewing so many of the important things happening in the Patient Space....finally!
Patients with rare diseases...orphan diseases like CF (less than 200,000 patients) are now on the forefront of healthcare...so important for research! There are more than 7000 known diseases yet only 200 have treatments!
So CF is a gateway to find more answers for more diseases.


  • Breaking down the patient journey: Mapping the patient journey is so important...(your records matter!)I listened to a very poignant talk by Peter Goodhand,He admitted that when his wife died 10 or so years ago of a very rare cancer...he didn't reach out to anyone and all the information he learned was private. He realized now how he wasted an opportunity to share and learn more!
  • Where does the data come from? Many of the talks were about DATA...it is the most important director for the future.
  • I met lots of important people who are working to make Data collection easy and relevant.
  • What data is important? This is an evolving story. How does the data begin to make sense? How does it evolve?
  • What role will (AI) artificial intelligence play in bringing us to new levels of healthcare?


  • And then I met so many people dealing with rare diseases...
The Rare Genes Summit Gala also honored: Christina Grimme with CF who died this year
http://hellogiggles.com/tribute-to-christina-grimmie-at-the-streamy-awards/
 
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I

Imogene

Administrator
At the Summit, I met so many wonderful people dealing with rare diseases. Two of my "new friends" are

drsusan.JPG
Dr Susan and Lucy. Both of them have an autoimmune disease.
They are inviting us all to their patient to patient conference in November. Of course for our community this doesn't work because of "cross infection".
However, if Care Givers would like to attend...it looks like a wonderful learning experience and a bargain..(5 star hotel all meals and the conference for $250!)

November 18-20 Palos Verdes California.

http://www.patienttopatientexperiencesymposium.com/agenda-patient.htm
 
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