Becky Pender
@HannahMeIDD8PCommunity Engagement Senior Associate at @RareRevolutionM #Advocate for #Epilepsy #RareDisease #PatientEngagement. Mammy of 4 girls. #SCN1B #InvDupDel8p #LGS
Similar User
@remember_girls
@elly_chapple
@lukebrosen
@LeahEDSCN2A
@geneticepilepsy
@makedoandSEND
@organicnut68
@LauraRutherford
@hollyw_1719
@KatieTraining
@CHAMP1Gene
@LlanelliG
@LornaFillingham
@Ring20UK
@EmmaSpagnola
Recognise anyone? We had the pleasure of being interviewed for this edition regarding #LongTermCaring and the multitude of futures we have to consider both emotionally and #financially being Hannahs parents. #CarersWeek #RealCarersWeek #InvDupDel8p #SCN1B #LennoxGastautSyndrome
As we celebrate #CarersWeek2022 here in the UK, it is the perfect time to recognise these unsung heroes and show just how much they are valued, appreciated and not alone in their RARE journey. #Carers #LongTermCaregiving #UnpaidCarers bit.ly/LongTermCaregi… @AlexionPharma
This has been 11 years in the making. After 14 months #seizure free Hannah has said one of the most important words she'll ever know........... her own name. ❤️ #LennoxGastautSyndrome #SCN1B #InvDupDel8p #LGS #RareEpilepsy
Colin done the most amazing job of capturing Hannah. Thank you @BeyondtheDx Along with the rare genetic conditions #InvDupDel8p and #SCN1B, Hannah also lives with a rare epilepsy #LennoxGastautSyndrome. Today is #LGS Awareness day. @LGS_Foundation
November 1st is International Lennox-Gastaut Syndrome Awareness Day. Please welcome the newest member of our BTD family, Hannah painted by Colin Howel!
663 phone calls later to the #accessible ticket booking line and Hannah and I are going to see #SClub7 in October. Getting #AccessibleTickets shouldn't be so difficult but it will be worth it to see my wee girls face when she is there. She loves music expecially @SClub7
My favourite @RareRevolutionM cover. Although I might be slightly biased with my husband and daughter on the cover. On #PatientEngagementDay2022 we are happy to #AmplifyTheCarerVoice and look at the multitude of futures our family faces. #LGS #InvDupDel8p #LennoxGastautSyndrome
#PatientEngagementDay2022 is here and the theme is #AmplifyTheCarerVoice. It’s FREE for everyone to participate. Just use the hashtags to share #carer stories and shape healthcare Let's look back at our #LongTermCare edition sponsored by @AlexionPharma bit.ly/LongTermCaregi…
We are hiring! Do you know a #ContentCreator who would fit well with the #DreamTeam? #ApplyNow rarerevolutionmagazine.com/join-our-team
Join our team. We are #hiring for a full time #ContentCreator. This is a job where you really get to make a difference in a creative and innovative company and an exciting opportunity to grow your role with us. Learn more: rarerevolutionmagazine.com/join-our-team/
Do you know the next @eurordis Black Pearl Awardee? There’s someone in your network who has improved the lives of people living with a rare disease through their extraordinary efforts. Let’s get their contribution noticed! Nominate them today! 👉 blackpearl.eurordis.org/nominate/
"It's so important for children to be able to see themselves represented in the toys they play with" - EastEnders actress Rose Ayling-Ellis who unveiled the first #Barbie doll with #HearingAids. bbc.co.uk/news/av/uk-625… #Inclusive #RepresentationMatters
"It's so important for children to be able to see themselves represented in the toys they play with" - EastEnders actress Rose Ayling-Ellis who unveiled the first #Barbie doll with #HearingAids. bbc.co.uk/news/av/uk-625… #Inclusive #RepresentationMatters
To the world of brilliant people, what types of research can help find treatment for neurological chromosome disorders like 8p? #tuesdaytakeover #chromsosome8p #8pheroes @chromosome8p
Meet of our #8pheroes! Most of our #8pheroes are nonverbal, so they express themselves best through dancing, humming to beats, and of course hugging! #tuesdaytakeover #chromsosome8p @chromosome8p
Chromosome 8p Day is on 8/8. We have prepared fun activities for #8pfamilies including visits to a zoo and an inclusive playground, dinners, and of course the much awaited 8000 Steps for 8p. #tuesdaytakeover #project8p #8pheroes @chromosome8p
Get to know Project 8p Foundation more as one of our PLB members, Amber, discusses our vision, mission, and strategic plan. @chromosome8p
Here are some facts about Chromosome 8p that you might not know yet. #tuesdaytakeover #project8p #8pheroes @chromosome8p
Many thanks to @RareRevolutionM for #tuesdaytakeover! August 8th is Chromosome 8p Day. Today we are making some noise about Chromosome 8p Disorders. #project8p #8pheroes @chromosome8p
Incredible intricate work by artist Rogan Brown “Cytokinesis: Glial Variation” (hand and laser cut layered paper 119x117cms/47x46”) This work depicts the mitosis of a glial cell. These cells are known as the "supporting cells" of the nervous system Photo Credit - Rogan Brown
Really looking forward to heading to @OrphanConf @orphan_drugs next week to meet so many of our amazing collaborators. Let me know if you will be there too! #WorldOrphanUSA
David - @davidrose88 and Becky - @HannahMeIDD8P will be on site in Boston for the #WorldOrphanUSA next week. They would really like to catch up with all of our clients and meet new ones. Please reach out to them both if you would like to set a meeting. @OrphanConf @orphan_drugs
Did you know that between our social media and our website we reach over 750,000 people worldwide EVERY MONTH? Does that make us #influencers?🤔 Talk to us about getting your organisation in front of our audience. Email hello@rarerevolutionmagazine.com to set up a call.
United States Trends
- 1. Feds 28,9 B posts
- 2. Clemson 10,4 B posts
- 3. Travis Hunter 24,5 B posts
- 4. Tyler Warren 1.633 posts
- 5. Hornets 8.834 posts
- 6. Nuss 1.862 posts
- 7. Heisman 11,6 B posts
- 8. Lamelo 5.719 posts
- 9. Chris Wright 8.701 posts
- 10. Trey Smack N/A
- 11. Brady Cook N/A
- 12. Bill Nye 4.620 posts
- 13. Lagway 1.908 posts
- 14. #UFC309 29,9 B posts
- 15. #mnwildfirst N/A
- 16. Colorado 75,7 B posts
- 17. Nebraska 7.239 posts
- 18. #Huskers N/A
- 19. #iubb 1.290 posts
- 20. Gators 5.210 posts
Who to follow
-
Remember The Girls
@remember_girls -
Elly Chapple Founder #FlipTheNarrative©💜
@elly_chapple -
Luke Rosen
@lukebrosen -
Leah
@LeahEDSCN2A -
GETA
@geneticepilepsy -
Sam Bowen
@makedoandSEND -
The Advocate
@organicnut68 -
Brody, Me & GDD (Laura Rutherford)
@LauraRutherford -
Holly_Wagner
@hollyw_1719 -
Katie Clarke
@KatieTraining -
We Raise ℂℍ𝔸𝕄ℙ𝟙ONS 🏴
@CHAMP1Gene -
Llanelli Changing Places Campaign Group
@LlanelliG -
Lorna Fillingham
@LornaFillingham -
Ring20UK
@Ring20UK -
Norfolk Loo Lady
@EmmaSpagnola
Something went wrong.
Something went wrong.