Spring 2020 Professionals and Places
Professionals and Places – LINKING
Contents
https://www.facebook.com/RareRevolutionMagazine/
Editors welcome
editor@rarerevolutionmagazine.com
Page 2
Melikian
http://www.giveto.ucsd.edu/giving/home/gift-referral/f2854fcb-77c2-4044-ac3e-521b84218dbb
https://www.rarerevolutionmagazine.com/back-issues.html
Greta
https://www.rarerevolutionmagazine.com/back-issues.html
Page 3 – 6 Footer https://www.rarerevolutionmagazine.com/
Page 4
Blue box https://www.rcpch.ac.uk/work-we-do/bpsu
Page 6 https://twitter.com/Rareman4u
Page 8-9 Footer – www.rnoh.nhs.uk
Page 9
Page 10-14 Footer : https://www.softbones.org/
Page 11 https://www.softbones.org/about/what-is-hpp/
Page 12 Rare Connect writing in text https://www.rareconnect.org/en
Page 14 https://twitter.com/SoftBonesHPP
https://www.linkedin.com/company/soft-bones-inc-us-hypophosphatasia-foundation/
Not sure how to get google play link
Page 15 – 17 Footer https://www.rarerevolutionmagazine.com/
Page 17 you need to add in a contact email here
Page 18 – 20 Footer is wrong on my version should be https://www.rarerevolutionmagazine.com/
80% of which have a genetic cause text https://www.genomicsengland.co.uk/understanding-genomics/rare-disease-genomics/
Page 19 European Journal text https://www.nature.com/articles/s41431-020-0579-y
Page 20 references https://www.nature.com/articles/s41431-020-0579-y
Page 21-23 Footer https://bionicalemas.com/
Page 23 Further reading https://www.nature.com/nbt/
Page 27 – 36 Footer https://www.openhealthgroup.com/
Page 28 Purple box https://www.ema.europa.eu/en
Page 30 image reference https://www.fda.gov/media/113768/download
BenSpeller@openhealthgroup.com
Page 31 OH Advert https://www.openhealthgroup.com/
Page 33 AnnieRankin@openhealthgroup.com
Page 36 sumirariaz@openhealthgroup.com
App advert sumirariaz@openhealthgroup.com
Page 37 – 39 Footer https://www.m4rd.org/
Page 37 https://www.facebook.com/Medics4RareDiseases/
Page 40 – 42 Footer https://www.samebutdifferentcic.org.uk/
Page 42 Katy@samebutdifferentcic.org.ukandcontact
https://www.linkedin.com/in/ceridwenhughes/
Page 44-47 Footer https://www.cookies4cures.com/
Page 46 info@cookies4cures.com
https://www.instagram.com/cookies4cures_kids/
Page 48 – 49 Footer https://www.rarerevolutionmagazine.com/
Page 49 drose@rarerevolutionmagazine.com
https://www.linkedin.com/in/drose2/
Page 50 – 58 Footer https://www.rarerevolutionmagazine.com/
Page 57 source text https://ghr.nlm.nih.gov/condition/cutis-laxa
Text http://cutislaxa.pitt.edu/
Page 58 think genetic logo https://www.thinkgenetic.com/
Page 59-61 Footer https://www.viforpharma.com/
Page 60 https://www.myancavasculitis.com/
Page 62-65 Footer https://globalgenes.org/
Page 66 – 69 Footer https://www.barthsyndrome.org/
Page 69 https://www.facebook.com/barthsyndromefoundation/
References https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.a.35609
https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-8-23
Page 70 https://elliejeanb.wordpress.com/
Page 72 and 73 Footer https://www.comradis.biz/ (The footer is spelt wrong)
Page 73 civitas survey http://thecivitasfoundation.org/covid-19-impact-surveys/
Page 74 Footer seangordon@rarefundingteam.com
Page 75 Blue box https://www.neurorehabvr.com/blog/2019/1/29virtual-reality-in-healthcare
Page 76 Links
Page 78-79 Footer dickgelati@outlook.com
Page 80 – Footer https://www.oliviagordon.com/
Page 81 – page number wrong on my copy
Footer https://www.rarerevolutionmagazine.com/
Links https://globalshakers.com/shaker-list/20-rare-disease-champions-to-know/
https://iamnumber17.geneticalliance.org.uk/david/
http://www.engagehealth.com/rare-disease-difference-maker/the-rare-revolutionaries/
Page 82-83 Footer https://www.theaat.org.uk/
Page 83 https://twitter.com/AplasticAnaemia
https://www.facebook.com/aplasticanaemiatrust/
https://www.instagram.com/aplasticanaemiatrust/
Members page
https://www.teddingtontrust.com/
http://www.lipodystrophy.co.uk/
http://www.epilepsyawarenessday.org/
https://www.pbcfoundation.org.uk/
http://diamondblackfan.org.uk/
https://www.pseudomyxomasurvivor.org/
https://www.burningnightscrps.org/
https://www.worldwidecancerresearch.org/
https://www.epilepsysparks.com/
https://www.salivaryglandcancer.uk/
Last page inside
https://www.facebook.com/RareRevolutionMagazine/?hc_ref=ARQLhtImZbsNtOFAgD10KujHHN8J1xRPFaSJNCQFu2yVvWXcB6WkPRO7h2MuENePei0&fref=nf https://twitter.com/rarerevolutionm
editor@rarerevolutionmagazine.com
rstewart@rarerevolutionmagazine.com
https://www.rarerevolutionmagazine.com/join-the-rare-revolution—charities-sign-up.html
Back page
See below.
Rare Rev stuff in case you need it https://www.facebook.com/groups/RareRevolutionMagazineRevolutionariesCommunity/
Facebook https://www.facebook.com/RareRevolutionMagazine/
Youth project https://www.facebook.com/RareYouthProject/?ref=br_rs
Twitter https://twitter.com/RareRevolutionM
Instagram https://www.instagram.com/rarerevolutionmagazine/
Linkedin https://www.linkedin.com/company/rare-revolution-magazine/
Professionals and Places – LINKING
Contents
https://www.facebook.com/RareRevolutionMagazine/
Editors welcome
editor@rarerevolutionmagazine.com
Page 2
Melikian
http://www.giveto.ucsd.edu/giving/home/gift-referral/f2854fcb-77c2-4044-ac3e-521b84218dbb
https://www.rarerevolutionmagazine.com/back-issues.html
Greta
https://www.rarerevolutionmagazine.com/back-issues.html
Page 3 – 6 Footer https://www.rarerevolutionmagazine.com/
Page 4
Blue box https://www.rcpch.ac.uk/work-we-do/bpsu
Page 6 https://twitter.com/Rareman4u
Page 8-9 Footer – www.rnoh.nhs.uk
Page 9
Page 10-14 Footer : https://www.softbones.org/
Page 11 https://www.softbones.org/about/what-is-hpp/
Page 12 Rare Connect writing in text https://www.rareconnect.org/en
Page 14 https://twitter.com/SoftBonesHPP
https://www.linkedin.com/company/soft-bones-inc-us-hypophosphatasia-foundation/
Not sure how to get google play link
Page 15 – 17 Footer https://www.rarerevolutionmagazine.com/
Page 17 you need to add in a contact email here
Page 18 – 20 Footer is wrong on my version should be https://www.rarerevolutionmagazine.com/
80% of which have a genetic cause text https://www.genomicsengland.co.uk/understanding-genomics/rare-disease-genomics/
Page 19 European Journal text https://www.nature.com/articles/s41431-020-0579-y
Page 20 references https://www.nature.com/articles/s41431-020-0579-y
Page 21-23 Footer https://bionicalemas.com/
Page 23 Further reading https://www.nature.com/nbt/
Page 27 – 36 Footer https://www.openhealthgroup.com/
Page 28 Purple box https://www.ema.europa.eu/en
Page 30 image reference https://www.fda.gov/media/113768/download
BenSpeller@openhealthgroup.com
Page 31 OH Advert https://www.openhealthgroup.com/
Page 33 AnnieRankin@openhealthgroup.com
Page 36 sumirariaz@openhealthgroup.com
App advert sumirariaz@openhealthgroup.com
Page 37 – 39 Footer https://www.m4rd.org/
Page 37 https://www.facebook.com/Medics4RareDiseases/
Page 40 – 42 Footer https://www.samebutdifferentcic.org.uk/
Page 42 Katy@samebutdifferentcic.org.ukandcontact
https://www.linkedin.com/in/ceridwenhughes/
Page 44-47 Footer https://www.cookies4cures.com/
Page 46 info@cookies4cures.com
https://www.instagram.com/cookies4cures_kids/
Page 48 – 49 Footer https://www.rarerevolutionmagazine.com/
Page 49 drose@rarerevolutionmagazine.com
https://www.linkedin.com/in/drose2/
Page 50 – 58 Footer https://www.rarerevolutionmagazine.com/
Page 57 source text https://ghr.nlm.nih.gov/condition/cutis-laxa
Text http://cutislaxa.pitt.edu/
Page 58 think genetic logo https://www.thinkgenetic.com/
Page 59-61 Footer https://www.viforpharma.com/
Page 60 https://www.myancavasculitis.com/
Page 62-65 Footer https://globalgenes.org/
Page 66 – 69 Footer https://www.barthsyndrome.org/
Page 69 https://www.facebook.com/barthsyndromefoundation/
References https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.a.35609
https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-8-23
Page 70 https://elliejeanb.wordpress.com/
Page 72 and 73 Footer https://www.comradis.biz/ (The footer is spelt wrong)
Page 73 civitas survey http://thecivitasfoundation.org/covid-19-impact-surveys/
Page 74 Footer seangordon@rarefundingteam.com
Page 75 Blue box https://www.neurorehabvr.com/blog/2019/1/29virtual-reality-in-healthcare
Page 76 Links
Page 78-79 Footer dickgelati@outlook.com
Page 80 – Footer https://www.oliviagordon.com/
Page 81 – page number wrong on my copy
Footer https://www.rarerevolutionmagazine.com/
Links https://globalshakers.com/shaker-list/20-rare-disease-champions-to-know/
https://iamnumber17.geneticalliance.org.uk/david/
http://www.engagehealth.com/rare-disease-difference-maker/the-rare-revolutionaries/
Page 82-83 Footer https://www.theaat.org.uk/
Page 83 https://twitter.com/AplasticAnaemia
https://www.facebook.com/aplasticanaemiatrust/
https://www.instagram.com/aplasticanaemiatrust/
Members page
https://www.teddingtontrust.com/
http://www.lipodystrophy.co.uk/
http://www.epilepsyawarenessday.org/
https://www.pbcfoundation.org.uk/
http://diamondblackfan.org.uk/
https://www.pseudomyxomasurvivor.org/
https://www.burningnightscrps.org/
https://www.worldwidecancerresearch.org/
https://www.epilepsysparks.com/
https://www.salivaryglandcancer.uk/
Last page inside
https://www.facebook.com/RareRevolutionMagazine/?hc_ref=ARQLhtImZbsNtOFAgD10KujHHN8J1xRPFaSJNCQFu2yVvWXcB6WkPRO7h2MuENePei0&fref=nf https://twitter.com/rarerevolutionm
editor@rarerevolutionmagazine.com
rstewart@rarerevolutionmagazine.com
https://www.rarerevolutionmagazine.com/join-the-rare-revolution—charities-sign-up.html
Back page
See below.
Rare Rev stuff in case you need it https://www.facebook.com/groups/RareRevolutionMagazineRevolutionariesCommunity/
Facebook https://www.facebook.com/RareRevolutionMagazine/
Youth project https://www.facebook.com/RareYouthProject/?ref=br_rs
Twitter https://twitter.com/RareRevolutionM
Instagram https://www.instagram.com/rarerevolutionmagazine/
Linkedin https://www.linkedin.com/company/rare-revolution-magazine/
