Elizabeth DAVENPORT @ Rare Advocate Consultancy
@elizabe86104691
I have worked in the charity sector for over 20 years. I have given non- clinical advice & guidance for people with rare and complex needs.
ID: 1409183829856763906
27-06-2021 16:16:34
61 Tweet
27 Followers
45 Following
Jayne Spink
@jayne451
NPUK
@niemannpickuk
Niemann-Pick UK is a charity providing support to those affected by Niemann-Pick Disease a group of rare, inherited, life-limiting diseases.
Foundation for Prader Willi Research UK
@fpwruk
The mission of FPWR UK is to eliminate the challenges of Prader-Willi through the advancement of research #PWS #praderwilli
Avril Kennan 🌍
@avrilkennan
CEO, Health Research Charities Ireland - @HRCIreland (views own). PhD in genetics. Ambitious for a better world through collaboration & inclusion. She/Her
Julie Algie
@julesalgie
Loves living life to the full 😍supports organ donation, Indie music, travel & skiing lover
Meena Upadhyaya OBE PhD FRCPath FLSW
@meenaupadhyaya
Emeritus Professor Cardiff University, Professor of Practice @uwtsd, Visiting Professor Delhi,NED@WelshGovernment, Chair/Founder Emwwaa and Emwwh
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Toni A Mathieson
@toninpuk
CEO @NiemannPickUK, wife, mother of three NPC angels, friend and rare disease patient advocate
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
nirian paez
@nidia_71551
SamebutDifferent
@sbdrareproject
Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
BDFA
@battendiseaseuk
Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure.
Philandra Costello 🇿🇼 🧬🧬
@philandrac
Lead Nurse Central and South Genomic Medicine Service Alliance @CaS_Genomics PROUD TO BE A NURSE
Luke Bryan
@luke_bryan31001
Erica Torres
@ericatorre40496
Libby Humphris
@libbyhumphris
Co-lead Public Involvement @EvidenceWales Honorary Research Associate @CUmedicengage Multiple chronic health issues, Crocheter 🧶
WSSPRCymru
@wssprcymru
Network of academics, practitioners & policy makers working to develop the evidence base for social prescribing. Part of @PRIMECentre, funded by @ResearchWales.
Professor Uzo Iwobi CBE FLSW FRSA
@uzoiwobi
First Black Specialist Policy Adviser on Equalities to the Welsh Govt. Lawyer, Antiracism &Leadership Trainer. I manage Ify Iwobi Music: [email protected]
David Ross
@mensraredisease
MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Ataxia and Me CIO 1184030
@ataxia_and_me
#Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
ChangeTherapy
@changetherapyuk
Psychotherapist/Counsellor - BSc (Hons) Psychology; Instuitive Psychologist. #Autism, #Wellbeing, #Neurodivergent
CDK13 Genetic Disorder
@cdk13d
This is the Twitter page for CDK13 Genetic Disorder.A rare genetic condition identified in 2016 & just 280 confirmed cases w/wide.Set up & run by Parent/Carers.
Breaking Down Barriers
@barriersdown
BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
European Journal of Human Genetics
@ejhg_journal
The official journal of the European Society of Human Genetics, providing insights into human genetics, genomics, molecular, clinical and cytogenetics research
Ryan Clayton
@ryancla75416594
#NetworkEngineer #Mycolgy #cybersecurity #ScienceTwitter I do all my own #tattoos
Sarah Wynn
@swynn_unique
CEO @unique_charity. All views my own.