AllStripes

Our mission is to unlock new treatments for people affected by rare disease.🚀

[AllStripes @_allstripes]

By joining forces, we’ll continue the work of harnessing the power of patient data to shape the future of evidence generation.

[AllStripes @_allstripes]

Today we are excited to announce that we are joining forces with PicnicHealth, a company that shares our vision of putting patients at the core of research. Read the full announcement here: https://t.co/mCUVxPPJFZ

[AllStripes @_allstripes]

PicnicHealth and AllStripes’ patient-centric model enables a deeper view of each patient's health while reducing the challenges of traditional site-based studies.

[AllStripes @_allstripes]

Thank you to the patient advocacy organizations who helped make this work possible: @CLOVESSyndrome, @GoPI3Ks, @WonderFILsmiles & @LGDAlliance. 3/3

[AllStripes @_allstripes]

Today is #LGDAwarenessDay, a day to raise awareness of lymphangiomatosis (complex lymphatic anomalies) and Gorham's disease. To help in these efforts, we are excited to share the final round of data insights from our CLA and PROS research cohort! 1/3

[AllStripes @_allstripes]

This data which covers demographics, diagnosis, symptoms and more was collected from 123 CLA and PROS patients and analyzed by the AllStripes Research Team. 2/3

[Children's Tumor Fdn @ChildrensTumor]

#FACT: Tumors from schwannomatosis may cause pain that can be extremely difficult to manage.

More NF Facts at https://t.co/DCE6afd6ye. More ways to #MakeNFVisible at https://t.co/nmJuZ2yKET.

#endnf #schwannomatosis #swn

[AllStripes @_allstripes]

Learn more about to support the GM1 community today and every day on @CureGM1's website: https://t.co/IVRL7TLyqh #GM1Day #TogetherAsOne

[AllStripes @_allstripes]

Today, May 23rd, is International GM1 Gangliosidosis Awareness Day! We want to share some information about this rare condition to help in the community’s awareness raising efforts.

[AllStripes @_allstripes]

GM1 is an inherited lysosomal storage disorder that destroys nerve cells in the brain & spinal cord. Researchers have classified the condition into 3 major types: infantile (type 1), juvenile (type 2) and adult onset or chronic (type 3).

[AllStripes @_allstripes]

Two of the rare conditions for which we have research programs, Morquio A & propionic acidemia (PCCB subtype), have been selected by the FNIH to be part of its Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium clinical trial portfolio. https://t.co/qLCqPtEv0B

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Today is #REDS4VEDS Day. Put on the red and let the whole world know to help raise awareness of vascular Ehlers-Danlos syndrome (vEDS).⁠

Wear something red, take a selfie & share it with #REDS4VEDS.⁠

Learn more about vEDS here: https://t.co/OVMdkIWE54 #vEDS #VascularEDS

[Children's Tumor Fdn @ChildrensTumor]

🌍💙Today is World NF Awareness Day!💙🌍
NF is a group of genetic disorders that cause tumors to grow on nerves. It affects millions of people worldwide, and today is about shining a spotlight on this important cause.

https://t.co/nmJuZ2yKET #makenfvisible #endnf #iknowafighter

[AllStripes @_allstripes]

Today is #WorldNFDay. NF refers to neurofibromatosis type 1 and type 2, genetic conditions that cause tumors to grow on nerves throughout the body. @ChildrensTumor is working on their awareness campaign to ‘Make NF Visible.’ Learn more here: https://t.co/678zu4RmF6

[CurePSP @CurePSP]

Join us on 5/17 for Community Conversations - Legislative Advocacy for PSP, CBD and MSA. Our guest speakers will share their experiences and insights on creating change in our community.

Let's make a difference together!

Register today! https://t.co/g1AdQbXGNp

#HopeInAction

[AllStripes @_allstripes]

#HopeInAction #BecauseHopeMatters (3/3)

[AllStripes @_allstripes]

May is @CurePSP Month of Awareness. We asked our PSP Ambassadors to share what they wish more people knew about #ProgressiveSupranuclearPalsy. #HopeInAction #BecauseHopeMatters (1/3)

[AllStripes @_allstripes]

#HopeInAction #BecauseHopeMatters (2/3)

[Rareminds @RaremindsUK]

Sadly this is not surprisingly - the interim results for our #Rare Mental Health Survey 2023 show that 76.3% of respondents report never having #MentalHealth support or signposting offered by their health care providers. #MentalHealth #MentalHealthAwareness #RareMindsMatter