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- This topic has 13 replies, 9 voices, and was last updated 1 week ago by
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Hi Nancy,
We work as well with rare, complicated and difficult to diagnose conditions at GreyZone. Happy to connect. You can look at our website at http://www.greyzonehealth.com
Io
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I also specialize in rare diseases. The rarer the better. 🙂 Zebras FTW!
Bayla Jacobson
Bayla.b.jacobson@gmail.com
323-633-9201
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Hi Nancy,
Before joining Deb as the Co-director of APHA, I specialized in rare disease advocacy mostly for the pediatric population. I am also a caregiver (my son was diagnosed with Gaucher disease at birth). It sounds like there are quite a few here who also specialize in rare disease advocacy. There is an upcoming conference – RARE Patient Advocacy Summit in San Diego (and virtually) being held in September: https://globalgenes.org/event/rare-patient-advocacy-summit/
If you are looking to connect with peers and patients, Facebook has been a great resource for connecting with others, and NORD has been a terrific resource for patient assistance organizations that help to pay for care.
Please reach out with questions or if I can be of help.
Dena
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I’m so glad to see other rare disease advocates on here. I too am a EDS patient turned advocate. Any interest in a shared email Google group to stay connected and share resources? I’m happy to set it up if people are interested. If you are – send me your email to christiehartcox@gmail.com.
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I’m a retired medical mom of adult kids with EDS, mast cells, eosinophilic esophagitis, POTS, and multiple other rare diseases. My approach is as a patient educator and coach to help rare disease patients and caregivers self-advocate for the care they need thru courses, a membership, and coaching sessions. The google group idea sounds great – I’ll send an email.
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What a great groups of advocates. I am on the editorial board of the Case Management society of America. We are going to do an issue on rare disease and would love if a few of you would like to write an article. This won’t be till 2023 as out editorial calendar is filled up till then. we will be looking for copy by early December, so if any one is interested, reach out to me and I can review the time line and other details.
Would like to see a variety of topics and issue people face from childhood through adulthood.
Thanks
Anne Llewellyn
allewellyn48@gmail.com-
Hi all, I have a few rare diseases….Chiari Malformation, Syringomyelia & Pseudocholinesterase deficiency. I am currently at a Chiari/Syringomyelia conference and am thrilled that I will be invited to sit on their board 🙂
If you would like me to provide any input, I would love to. I am a success story and find people need to hear that’s there is hope. I hope to advocate for those with these conditions within my business as well.
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Those of you who shared your email were invited to the Google email group today called APHARare- the email to use to group communicate is “APHArare@googlegroups.com” but you must be a member. I made it private so the public cannot subscribe. If you want to join in and did not post your email above, please let me know by EMAILING ME at christiehartcox@gmail.com and I will add you.
No worries if you dont have a gmail account – see how to join here – https://support.google.com/groups/answer/1067205?hl=en#request
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OMG – I had no idea there were so many responses. It’s wonderful! (I thought I would get an email notification when there were responses, but I must have been dreaming!) Thank you to everyone who replied, as well as for the information you provided.
I’ve had some exposure to rare diseases over my years in academia, but no first hand experience. I’m looking to learn and collaborate with anyone interested.
Would you like a monthly Zoom meeting (or more often) to discuss our mutual and disparate areas of focus, expertise/experiences, and best practices? I’d be happy to put that group together.
I’ve asked Christie to let me into the gmail group. That may be the best forum for connecting, or we can use this APHA forum. Suggestions? Comments?
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