Rare Access Action Project @AccessRare

Joined September 2022

Tweets

12
Followers

17
Following

31
Likes

6

No recent Tweets. New Tweets will appear here.

James L Spencer @LouVABCTC

59 Followers 567 Following

Independent Reiki Master, Family Caregiver, Disability, Chronic Illness, & Veterans Advocate. Living w/ Psoriatic Arthritis, Epilepsy & more.

Teresa M. Stallone @tstallone

3K Followers 4K Following Independent Reiki Master, Family Caregiver, Disability, Chronic Illness, & Veterans Advocate. Living w/ Psoriatic Arthritis, Epilepsy & more.

Mark Hobraczk @MHobraczk

1K Followers 5K Following Ai Arthritis Director Public Policy. Soccer dad and patient with ankylosing spondylitis. Wendish. Opinions my own.

JS @JohnSpera

184 Followers 2K Following Husband/ Dad/ Healthcare strategist/ Recreational chef/ Philly sports fan

We are a group of patients and parents that are working hard to ensure continued, affordable access to Cystic Fibrosis therapies.

Cystic Fibrosis Unite... @cfunited2023

33 Followers 191 Following We are a group of patients and parents that are working hard to ensure continued, affordable access to Cystic Fibrosis therapies.

GShen @GShen214045

0 Followers 61 Following

Teacher, thinker, traveler, British Lit lover, pro-lifer, University of Wisconsin-Madison grad, Earth steward! I don't fit in a box, so don't even try.

Sheri B @RainyBadger

176 Followers 656 Following Teacher, thinker, traveler, British Lit lover, pro-lifer, University of Wisconsin-Madison grad, Earth steward! I don't fit in a box, so don't even try.

ACT Now @ACTNowColorado

16 Followers 128 Following

Ensuring Access through Collaborative Health (EACH) Coalition of patient organizations and Patient Inclusion Council (PIC) comprised of patient advocates

EACHPIC @EachPic

42 Followers 119 Following Ensuring Access through Collaborative Health (EACH) Coalition of patient organizations and Patient Inclusion Council (PIC) comprised of patient advocates

Dustin Perchal @dustinperchal

249 Followers 2K Following

National nonprofit working to help those living with HIV/AIDS and/or Viral Hepatitis receive access to care and treatment.

TIICANN @TIICANN

1K Followers 837 Following National nonprofit working to help those living with HIV/AIDS and/or Viral Hepatitis receive access to care and treatment.

ADAP Advocacy works to promote & enhance the AIDS Drug Assistance Program (ADAP) and improve access to care for persons living with HIV/AIDS. #UequalsU

ADAPs @adapadvocacy

7K Followers 2K Following ADAP Advocacy works to promote & enhance the AIDS Drug Assistance Program (ADAP) and improve access to care for persons living with HIV/AIDS. #UequalsU

World Orphan Drug Con... @OrphanConf

5K Followers 859 Following Get regular updates on #WorldOrphanUSA! June 9-11, 2026 | Boston Convention & Exhibition Center

Founder @MyOwnImage_org | Fighting against Technology-Facilitated Violence and Abuse and all forms of Gender-Based & Sexual Violence

Susanna Gibson @SusannaSGibson

8K Followers 1K Following Founder @MyOwnImage_org | Fighting against Technology-Facilitated Violence and Abuse and all forms of Gender-Based & Sexual Violence

Nena @Nenaadvocacy

592 Followers 973 Following #Rheumatology #DPC #DSC #WI #Latina Satire.

Jean @trapp43jean

1K Followers 4K Following WOMAN. Wife, Mom. Gym rat. Guns and Jeeps. Carnivore.

Michael Eging @MichaelEging

31K Followers 14K Following Policy professional, screenwriter, and author. Amazon bestselling author.

Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi

Rare Disease Report @RareDR

15K Followers 1K Following Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi

#NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py

National Organization... @RareDiseases

40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py

Official global newsroom account for Biogen, a leading biotech company pioneering innovative science since 1978. Community guidelines: https://t.co/56frPQHf74

Biogen @biogen

45K Followers 241 Following Official global newsroom account for Biogen, a leading biotech company pioneering innovative science since 1978. Community guidelines: https://t.co/56frPQHf74

Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research.
https://t.co/qWTTVoKeyL

RareDiseaseFdn @rarediseasefdn

8K Followers 490 Following Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. https://t.co/qWTTVoKeyL

28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

Rare Disease Day @rarediseaseday

42K Followers 3K Following 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

MACPAC @macpacgov

4K Followers 669 Following Advising Congress on Medicaid and CHIP Policy

Congresswoman for MN-03. Mom. Physician. Former Minnesota state Senator. 6th generation Minnesotan. Prepared and paid for by Morrison for Congress.

Kelly Morrison @Morrison4MN

9K Followers 2K Following Congresswoman for MN-03. Mom. Physician. Former Minnesota state Senator. 6th generation Minnesotan. Prepared and paid for by Morrison for Congress.

We are the nation’s leading not-for-profit, independent health & wellness information source for women. | #RealWomenRealStories

HealthyWomen @HealthyWomen

18K Followers 2K Following We are the nation’s leading not-for-profit, independent health & wellness information source for women. | #RealWomenRealStories

Patient Worthy @PatientWorthy

8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.

Leucine Rich Bio @LeucineRichBio

2K Followers 1K Following @BugSpeaks - South Aisa's first Microbiome Test

We are a genomic precision medicine company using whole genome sequencing for diagnosing rare genetic disorders and cancer treatment optimization.

Variantyx Inc. @variantyx

251 Followers 39 Following We are a genomic precision medicine company using whole genome sequencing for diagnosing rare genetic disorders and cancer treatment optimization.

FierceBiotech @FierceBiotech

102K Followers 627 Following The dominant B2B news brand for biotech. Delivering news, revealing insights straight to your inbox.

Pharma’s go-to destination for news & trends shaping approved drugs. Delivering news, revealing insights straight to your inbox.

FiercePharma @FiercePharma

100K Followers 470 Following Pharma’s go-to destination for news & trends shaping approved drugs. Delivering news, revealing insights straight to your inbox.

Leading non-profit #health #advocacy for funding research and defending #ChronicRights - fighting for all affected by #chronicdisease RTs not endorsements

Chronic Disease Coali... @ChronicRights

12K Followers 489 Following Leading non-profit #health #advocacy for funding research and defending #ChronicRights - fighting for all affected by #chronicdisease RTs not endorsements

Eisai Inc. is a research-based human health care (hhc) company breaking through in oncology and neurology. View our community guidelines: https://t.co/1XdB1FUwhU

Eisai US @EisaiUS

6K Followers 621 Following Eisai Inc. is a research-based human health care (hhc) company breaking through in oncology and neurology. View our community guidelines: https://t.co/1XdB1FUwhU

An alliance of nonprofit organizations mobilizing people and resources in the U.S. for development programs in India.

India Philanthropy Al... @phil_india

1K Followers 229 Following An alliance of nonprofit organizations mobilizing people and resources in the U.S. for development programs in India.

Vertex Pharmaceutical... @VertexPharma

70K Followers 83 Following The official channel for Vertex Pharmaceuticals. https://t.co/RRKBue0r0B

Orchard Therapeutics ... @orchard_tx

2K Followers 405 Following Dedicated to transforming the lives of patients with inherited diseases through innovative gene therapy.

President/CEO ADNP Kids Research Foundation /ADNPkids.com,SPARK For Autism Advisory Committee, Advocacy Ambassador for Autism Speaks, Mom to Tony (aka Superman)

Sandra Sermone @ssermone

106 Followers 199 Following President/CEO ADNP Kids Research Foundation /ADNPkids.com,SPARK For Autism Advisory Committee, Advocacy Ambassador for Autism Speaks, Mom to Tony (aka Superman)

The leading voice for decision-makers throughout the global biopharma ecosystem. Follow us on LinkedIn for exclusive insights & analysis: https://t.co/V33Z1gfUfZ

BioCentury @BioCentury

17K Followers 2K Following The leading voice for decision-makers throughout the global biopharma ecosystem. Follow us on LinkedIn for exclusive insights & analysis: https://t.co/V33Z1gfUfZ

MassBio is committed to advancing MA's leadership in the life sciences to grow the industry, add value to the healthcare system & improve patient lives.

MassBio @MassBio

45K Followers 2K Following MassBio is committed to advancing MA's leadership in the life sciences to grow the industry, add value to the healthcare system & improve patient lives.

CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: https://t.co/9LbZmE3Wzg

CDC @CDCgov

5.5M Followers 244 Following CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: https://t.co/9LbZmE3Wzg

We are the @UN’s health agency working for #HealthForAll
Always check our latest tweets for updated advice/information.

World Health Organiza... @WHO

12.6M Followers 2K Following We are the @UN’s health agency working for #HealthForAll Always check our latest tweets for updated advice/information.

Mac Haddow @HaddowMac

5K Followers 4K Following Senior Fellow on Public Policy at the American Kratom Association

David Thomas, CFA @DavidThomasCFA

1K Followers 352 Following Biotech industry research

BIO Convention @BIOConvention

25K Followers 6K Following #BIO2022 June 13-16

Uniting caring with discovery to create medicines that make life better worldwide. Lilly’s official account (formerly LillyPad) https://t.co/oXewUD8FZI

Eli Lilly and Company @EliLillyandCo

145K Followers 1K Following Uniting caring with discovery to create medicines that make life better worldwide. Lilly’s official account (formerly LillyPad) https://t.co/oXewUD8FZI

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.

Contact us: hello@rarerevolutionmagazine.com

RARE Revolution Magaz... @RareRevolutionM

12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]