Look for PCORI-funded project papers generally. There are a LOT of papers
about hypoplastic left heart syndrome published by participating centers in
the National Pediatric Cardiology QI Consortium that have patient/family
co-authors, such as Stacey Lihn
https://www.ncbi.nlm.nih.gov/pubmed/?term=Lihn%20S%5BAuthor%5D&cauthor=true&cauthor_uid=30567622

On Thu, Feb 14, 2019 at 12:02 PM Pamela Sieving <[log in to unmask]>
wrote:

> Sharon Terry's children have pseudoxanthoma elasticum.  She did a great
> deal to push the NIH Public Access policy towards enactment, and is an
> author on papers about the disease; for instance  PMID 25383264 (and you
> can go from there to other papers on which she is an author).
>
> I'm sorry that I don't have ideas for a more generalized search; you might
> try contacting NORD.
>
> Pam
>
>
>
>
> On Thu, Feb 14, 2019 at 9:45 AM Anna Bensch <[log in to unmask]> wrote:
>
> > Good morning all!
> >
> > I've been asked to find publications (ideally in the rare disease space)
> > where patients were included as authors.  If anyone has suggestions on
> > this, it would be greatly appreciated!  Thank you!
> >
> > Best,
> >
> > Anna Bensch, MLIS
> > Senior Medical Librarian
> > 175 Wall Street
> > Princeton, NJ 08540
> > Direct: (609) 524-2337
> > [Library-Logo-6]
> >
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> in
> > any manner without appropriate authorization may be a violation of
> > copyright. Please contact the library with any questions.
> >
>
>
> --
>
> Pamela C. Sieving, MA, MS, AHIP
> 7309 Bannockburn Ridge Court
> Bethesda, Maryland 20817
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>
>
>
>
> -----
> But yield who will to their separation,
> My object in living is to unite
> My avocation and my vocation
> As my two eyes make one in sight.
> Only where love and need are one,
> And the work is play for mortal stakes,
> Is the deed ever really done
> For Heaven and the future's sakes.
>     (Robert Frost:  Two Tramps in Mud Time)
>