Indousrare

Indo US Organization for Rare Diseases (IndoUSrare) is a non-profit 501(c)(3) tax-exempt organization building collaborative bridges between the east and the west to accelerate therapies for rare diseases.

Operating as usual

Photos from Indousrare's post 13/01/2022

Watch recordings of Day 1 #advocacyday at #INDOUSRARE2021 featuring #keynoteaddress by #MadhulikaKabra & #paneldiscussion on #patientvoices & #patientadvocacy by #patientadvocates

#powerofone #raredisease #advocacy
- https://mailchi.mp/indousrare/advocacyday2021videos

Photos from Indousrare's post 12/01/2022

Now available - Video recordings of the sessions from Patients Alliance Day at the IndoUSrare Annual Conference 2021
#indousrare2021 #patientsallianceday #patienteducation #patientsupport #patientvoice #raredisease #advocacy #rarediseaseresearch #orphandrug #patientadvocacy - https://mailchi.mp/indousrare/patientsalliancedayvideos

Photos from Indousrare's post 11/01/2022

ICYMI - IndoUSrare Annual Conference 2021
We are pleased to share video recordings of the sessions from Industry Day - Panel Discussion and Fireside Chat with a Legend
#indousrare2021 #industryday #firesidechat #paneldiscussion #raredisease #advocacy #rarediseaseresearch #orphandrug #patientadvocacy

- https://mailchi.mp/indousrare/industrydayvideos

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others. 10/01/2022

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others.

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others. He just finished his MBBS this year and is currently doing an internship.

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others. 10/01/2022

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others.

Very Inspiring!

Congratulations Sarthak!

Sarthak Has a Rare Degenerative Condition. But He’s Becoming a Doctor to Help Others.

https://www.thebetterindia.com/50609/sarthak-kamath-doctor-despite-degenerative-condition/

Sarthak Has a Rare Degenerative Condition. But He's Becoming a Doctor to Help Others. He just finished his MBBS this year and is currently doing an internship.

09/01/2022

Know Before You Go

Photos from CLAW_Global's post 09/01/2022

Photos from CLAW_Global's post

07/01/2022

First-of-its-kind JAMA Network Open study presents solutions from a cross-section of 40 experts, identifies challenges facing the U.S. #newbornscreening system and outlines solutions for modernization. https://bit.ly/331bopx

07/01/2022

Join our Cloud HD Video Meeting

Join our Cloud HD Video Meeting Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

Creating a Faster Path to a Rare Disease Diagnosis - RARE-X 07/01/2022

Creating a Faster Path to a Rare Disease Diagnosis - RARE-X

Creating a Faster Path to a Rare Disease Diagnosis - RARE-X RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.

Pre Clinical Assessment of AAVrh74.MCK.GNE Viral Vector Therapeutic Potential: Robust Activity Despite Lack of Consistent Animal Model for GNE Myopathy - IOS Press 07/01/2022

Pre Clinical Assessment of AAVrh74.MCK.GNE Viral Vector Therapeutic Potential: Robust Activity Despite Lack of Consistent Animal Model for GNE Myopathy - IOS Press

Pre Clinical Assessment of AAVrh74.MCK.GNE Viral Vector Therapeutic Potential: Robust Activity Despite Lack of Consistent Animal Model for GNE Myopathy - IOS Press Background: GNE myopathy is a unique adult onset rare neuromuscular disease caused by recessive mutations in the GNE gene. The pathophysiological mechanism of this disorder is not well understood and to date, there is no available therapy for this de

Research Study Update: Muscle Strength and Physical Functioning - The Ehlers Danlos Society 07/01/2022

Research Study Update: Muscle Strength and Physical Functioning - The Ehlers Danlos Society

Research Study Update: Muscle Strength and Physical Functioning - The Ehlers Danlos Society New research has been published that studied “Muscle Strength, Muscle Mass and Physical Impairment in Women with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.” The authors of the research, Marie Coussens, Bruno Lapauw, Thiberiu Banica, Inge De Wandele, Verity Pacey, Lie...

07/01/2022

Do you have an aortic dissection, or are you at risk for one? Do you love someone who does?

Do you take care of patients with or at risk for aortic dissection?

The Aortic Dissection Collaborative has spent the last two years learning from people in the aortic dissection community about your experiences and needs. Now we are taking what we've learned and developing priorities for future research to improve the lives of people with and at risk for aortic dissection. Take this short, confidential, voluntary survey to help the Aortic Dissection prioritize future research in aortic dissection.

The Aortic Dissection Collaborative, led by Dr. Sherene Shalhub at the University of Washington and an Advisory Group of patients and family members, brings together the aortic dissection community as partners in patient-centered outcomes research.

Take the survey: tinyurl.com/ADCollabPrioritizationSurvey

05/01/2022

Join NDF Board Co-Chair, Tricia Mullins THIS SUNDAY 1/9 @ 9am PST for the first patient HUDDLE of 2022 with a conversation about; “Living with a Rare Disease: Preparing & Setting Goals for The New Year” 💪🏻😃

➡️Get your spot today https://bit.ly/JanPatientHuddle

#neuromusculardisease #mda #careaboutrare #gnemyopathy #sundayvibes #friendship
#neuromusculardiseasfoundation #hibm #gnem #communitylove

Photos from Simons Searchlight's post 05/01/2022

Photos from Simons Searchlight's post

29/12/2021

“I feel seen, heard, loved and held.” - Maggie, Netherlands, MPSII (Hunter Syndrome), 2020 Wellness Retreat

Join us for M.O.R.E, an intimate retreat for Rare Mothers. Cultivate relief for the mind + body. Connect, transform, and rebuild from the inside out.

January 21 - March 6, 2022

Register for M.O.R.E here: https://www.angelaidcares.org/more-virtual-retreat

Rare caregivers, especially Rare Mothers, are being asked to give more of themselves to others. You are under constant stress. It can be difficult to maintain friendships, which can lead to feelings of isolation and loneliness.

Our Rare Mother Wellness Retreat will connect you with Rare Mothers who will get you like no one else can.

Together over 6 weeks, we will build a community through sensory self-care experiences, social events, and workshops with Dr. Laura Riordan and other practitioners from our network.

ANGEL AID strives to be inclusive to ensure a rich diversity of perspectives and caregiver experiences. Though we invite participants to pay for the retreat, we also commit to sponsoring those who cannot afford to pay.

#angelaidcares #angelaid #raremothers #raremother #raremom #raremoms #raredisease #rarediseases #patientadvocacy #caregiver #caregivers #selfcare #calm #sharing #community #motherhood #sma #spinalmuscularatrophy #mps #emotionalwellness #friends #criduchat #5pminus #supportgroup #duchenne #endduchenne #adrenoleukodystrophy #treatment #bpan #pmg

28/12/2021

Oxygen Concentrators Available!

Oxygen concentrators are now available for use by patients and families affected by rare diseases in India.

One is available in Delhi and one in Bangalore.

If anyone in your community in India has an immediate requirement for an Oxygen concentrator, please reach out on our social media handles or write to us at [email protected] for further details/queries.

#raredisease #rarediseasecommunity #indousrare #roar4rare #patientcare #Covid19India #fundraising #donations #oxygenconcentrator #Delhi #NewDelhi #Bengaluru #India #Bangalore

Oxygen Concentrators Available!

Oxygen concentrators are now available for use by patients and families affected by rare diseases in India.

One is available in Delhi and one in Bangalore.

If anyone in your community in India has an immediate requirement for an Oxygen concentrator, please reach out on our social media handles or write to us at [email protected] for further details/queries.

#raredisease #rarediseasecommunity #indousrare #roar4rare #patientcare #Covid19India #fundraising #donations #oxygenconcentrator #Delhi #NewDelhi #Bengaluru #India #Bangalore

2021 Platforms of Hope – Realizing the Potential of Genetic Medicines - Global Genes 26/12/2021

2021 Platforms of Hope – Realizing the Potential of Genetic Medicines - Global Genes

2021 Platforms of Hope – Realizing the Potential of Genetic Medicines - Global Genes This report is the culmination of a year-long Global Genes multimedia reporting series in collaboration with the National Institutes of Health with the goal of helping the rare disease community understand emerging issues of genetic medicines, the challenges of moving these from the lab to the patie...

22/12/2021

Up to date Reviews and New Research Featured in the⁠ Latest Volume of the American Journal of Medical Genetics!⁠

In October 2020, our educational program, EDS ECHO, brought together experts for a conference on comorbidities in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).⁠

The presentations and selected new research have been collated by Dr. Alan Hakim, Dr. Brad Ti**le, and Dr. Clair Francomano (Guest Editors) into a Special Issue of the American Journal of Medical Genetics, Part C published this December. ⁠

The papers are ‘free to read’. Find the December volume here: https://onlinelibrary.wiley.com/toc/15524876/2021/187/4

21/12/2021

Today is our founder Harsha Karur Rajasimha's birthday – Your team wishes you all the best and a very happy birthday. 🎂🎂🎂 #happybirthday #indousrare #birthdaywishes #birthdaycelebration

Today is our founder Harsha Karur Rajasimha's birthday – Your team wishes you all the best and a very happy birthday. 🎂🎂🎂 #happybirthday #indousrare #birthdaywishes #birthdaycelebration

Timeline Photos 18/12/2021

Season's Greetings from IndoUSrare - https://mailchi.mp/indousrare/seasonsgreetings2021 #happyholidays #happychristmas #happnewyear #indousrare #indousrare2021 #hope #happiness #rarediseases #rarediseaseawareness #donate #support

Season's Greetings from IndoUSrare - https://mailchi.mp/indousrare/seasonsgreetings2021 #happyholidays #happychristmas #happnewyear #indousrare #indousrare2021 #hope #happiness #rarediseases #rarediseaseawareness #donate #support

Timeline Photos 17/12/2021

Timeline Photos

More than 400 million people are affected by #raredisease around the globe, and the struggles they face to find answers or the right treatment are cumbersome and frustrating. Our vision is to eliminate these challenges. Support our efforts by donating. Text RARE to 41444 to contribute. #careaboutrare

Timeline Photos 17/12/2021

Timeline Photos

More than 400 million people are affected by #raredisease around the globe, and the struggles they face to find answers or the right treatment are cumbersome and frustrating. Our vision is to eliminate these challenges. Support our efforts by donating. Text RARE to 41444 to contribute. #careaboutrare

Genetic epidemiology of autoinflammatory disease variants in Indian population from 1029 whole genomes - Journal of Genetic Engineering and Biotechnology 16/12/2021

Genetic epidemiology of autoinflammatory disease variants in Indian population from 1029 whole genomes - Journal of Genetic Engineering and Biotechnology

Genetic epidemiology of autoinflammatory disease variants in Indian population from 1029 whole genomes - Journal of Genetic Engineering and Biotechnology Background Autoinflammatory disorders are the group of inherited inflammatory disorders caused due to the genetic defect in the genes that regulates innate immune systems. These have been clinically characterized based on the duration and occurrence of unprovoked fever, skin rash, and patient’s an...

Timeline Photos 15/12/2021

Timeline Photos

Last week, Joni Rutter of National Center for Advancing Translational Sciences hosted a wonderful session at the EveryLife Foundation for Rare Diseases Community Congress Annual Meeting where the discussion surrounded the impact and cost of #raredisease. This image powerfully illustrates some of the points that were discussed. #careaboutrare

Photos from Rare Revolution Magazine's post 15/12/2021

Photos from Rare Revolution Magazine's post

EDS affects me every day of my life 15/12/2021

EDS affects me every day of my life

EDS affects me every day of my life I started having pain and issues around 7 years old, but it wasn’t until I was almost 16 that I was diagnosed with Ehlers-Danlos syndrome (EDS). I went through hundreds of tests, procedures, and I was even told that it was “in my head.” EDS affects me every day of my life in many different

Rare Diseases: A Conversation on Value Assessments 11/12/2021

Rare Diseases: A Conversation on Value Assessments

Rare Diseases: A Conversation on Value Assessments One in 10 Americans suffers from a rare disease—that’s 30 million Americans who need access to treatment. According o the NIH, a rare disease is one that affects fewer than 200,000 people in the United States at any given time.

11/12/2021

"Having a rare disease is hard; no one understands that more than #pemphigus and #pemphigoid patients. The willingness to help one another, even through a computer screen, will always be a silver lining I will remember from the COVID-19 pandemic. We can’t wait until we can all be together in person again, but until that day, the IPPF is here for you."

Check out the recap of the 2021 Virtual Patient Education Conference available on PemPress: https://loom.ly/Rp-q2s4 #healourskin

Please help Mehezabin to beat Moaymoya disease, organized by Setu Haque 10/12/2021

Please help Mehezabin to beat Moaymoya disease, organized by Setu Haque

Please help Mehezabin to beat Moaymoya disease, organized by Setu Haque Hi my name is Khadija. I am a mother of Mehezabin who is a Moyamoya disease… Setu Haque needs your support for Please help Mehezabin to beat Moaymoya disease

08/12/2021

Today, the EveryLIfe Foundation is hosting the 2021 #communitycongress Annual Meeting.

The Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together.

To learn more please visit: https://bit.ly/2VYL7RS

Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford - Full Text View - ClinicalTrials.gov 08/12/2021

Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford - Full Text View - ClinicalTrials.gov

Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford - Full Text View - ClinicalTrials.gov Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford - Full Text View.

Indo-US Organization for Rare Diseases

IndoUSrare is an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India and globally with a vision to build collaborative highway-bridges between the west and the east to accelerate research and development of diagnostics and therapies through education, advocacy, research, and grants.

IndoUSrare will serve as a gateway to the highway-bridges between the USA, and the Indian subcontinent to accelerate research & development of Diagnostics, Drugs, Devices, Biologics, and Therapeutics for rare diseases.

The USA is the largest funder of biomedical research with a forward-looking regulatory framework for innovative new medicines including cell and gene therapies. India is the largest democracy with a genetically diverse population of over 1.3 Billion people. Yet, India accounts for less than 1% of the global clinical research footprint. IndoUSrare will address this gap through enabling education, awareness, advocacy, fostering research collaborations and patient engagement in global clinical trials.

Our Board of Directors:

Videos (show all)

"Clinical Trials: The Hope to Cure Rare Diseases" IndoUSrare Webinar by Mohamed Duklef
Rare Disease Day at IndoUSrare and ART4RARE Awards
IndoUSrare Webinar - Finding Commonalities in Rare Diseases
Happy New Year from Team IndoUSrare
IndoUSrare wishes everyone good health and the brightness of knowledge. Happy Diwali!!!
IndoUSrare #webinar series by James Valentine on Rare Disease Patient Engagement with FDA: Setting the Context for Regul...
IndoUSrare Webinar - The Rare Journey, Its What Unites Us - by Nicole Boice

Products

Education and Research Programs
IndoUSrare patient alliance
IndoUSrare corporate alliance
RARE-X partnership
Global Genes Partnership

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