Email: contactus@ordiusa.org

ORDIUSA Indo-US Rare Diseases Newsletter Nov 2018

 

 

A Letter from our Co-Founder and Executive Board Director

Hello and welcome to the inaugural newsletter of the Organization for Rare Diseases India in USA (www.ordiusa.org). I am Harsha Rajasimha, PhD, CoFounder and Executive Board Director of ORDIUSA and ORDIndia. After losing a child to a rare congenital disease in 2012, I got determined to apply my years of post-doctoral clinical genomics data research experience at National Institutes of Health and industry product development experience to develop products and solutions to help accelerate clinical research. After meeting Mr. Prasanna Shirol, father of a child with an ultra rare disease called Pompe, living in India, the two of us brought together a team of kindred spirits to form ORDIndia to fill the many unmet needs of rare disease stakeholders in India (see our foundational review article Rajasimha et al. published in Genetics Research 2014).We are at a time where genomics driven biomedical sciences are highly advanced yet people with rare diseases continue to suffer from delays in diagnosis, lack of treatment (95% of rare diseases have no therapies) and researchers are impatient. This offers unique opportunities for innovative public private collaborations between national and international organizations.

ORDIUSA is a partner organization of ORDIndia and cooperate closely with them to engage rare disease stakeholders in India with their counterparts in US and other countries. Our vision is to foster collaborations between patient advocacy groups and researchers in US, India, and other countries to help accelerate clinical research, trials and therapy access across borders. ORDIUSA will be a catalyst in making rare diseases as easily diagnosed and treated as common diseases like Diabetes, Hypertension, TB, and AIDS.

ORDIUSA MISSION STATEMENT

  1. Connecting patients living with rare diseases in India and USA with patient advocacy groups, with research or clinical trials and international Consortia such as IRDiRC, Global genes and UDNI. 
  2. Accelerating diagnosis and treatment options for patients with rare diseases through multinational public-private partnerships.
  3. Exchange and mutual co-operation for public health policy development/implementation, such as Rare Disease Policy and Orphan Drug Policy between USA, India and other countries.
  4. Organizing national and international conferences to bring all stakeholders of rare diseases together for debates and discussions.
  5. Facilitate cross-border research collaborations.

 

EVENT INVITATION
ORDIUSA is collaborating with WHEELS Global Foundation to organize the Forum on “Role of Technology in Accelerating Diagnostics and Therapies for Rare Diseases” at The WHEELS Conference and Gala Awards Ceremony.
WHEN: Nov 17, 2018, 10:30 AM to 1:30 PM
WHERE: Franklin Institute for Science and Technology, Philadelphia
Click here to REGISTER as a guest of ORDIUSA. Guest passes are available.
 

RACEFOR7: A 7 Km walk or run event at 9 metro cities in US and India
REGISTER
Event Date: Sunday, Feb 24, 2019. 
Venue options in the USA include Washington DC, Greenville SC, Dallas TX, and San Francisco CA. RaceFor7 is a massive annual international rare diseases awareness and fund-raising campaign launched in India and USA to coincide with the International rare disease day, on the last Sunday of February, has quickly scaled to thousands of people participating in a 7 Km walk or run at numerous metro cities in India and USA. This has achieved maximum awareness and attention to the cause of all rare diseases from various stakeholders. Registration is now open for Racefor7 – https://www.racefor7usa.com.
For sponsoring ORDIUSA events, write to usa@ordindia.org.
               ,

SAVE THE DATES!


  • Karunya Sandhya: is a charity fundraising event – a magnum opus dance-drama production by a world renowned artist, Dr. Sanjay Shantharam and and a play directed by Nithish Sridhar. 4 PM onwards on Dec 8, 2018 in Northern Virginia. TICKETS coming soon!
  • 7th annual Undiagnosed Diseases Network International: Co-hosted by ORDIndia & UDNI, Ganga Ram Hospital and CSIR-IGIB @New Delhi: Apr 13-15, 2019.  
                       

PAST EVENTS: We were here recently…

  • Globalgenes patient advocacy summit, Irvine, CA; Oct 2018: Founders Dr. Harsha Rajasimha & Mr. Prasanna Shirol were sponsored attendees with 800+ attendees from around the globe. They met with ORDIUSA patient advocates from 13 countries to brainstorm ideas and strategies for success of national umbrella organizations.

  • NORD Summit, Washington DC, Oct 2018: Dr. Harsha Rajasimha and team presented a poster of digital health technologies to identify patients with rare and undiagnosed diseases.

  • MAGI (Model Agreements and Guidelines International) Conference, Oct 21-23; San Diego, CA: Dr. Harsha Rajasimha was honored to speak on a panel on “Conducting clinical trials in rare diseases” with Scott Schliebner from PRA Health, Lisa Campbell, moderated by Joan Chambers from Clin-Edge. 
  • UNDCA Community event on Autism Spectrum Disorders, Sterling, VA: Dr. Harsha Rajasimha along with Mr. Nara Govindarajan from ORDIUSA presented on the challenges and opportunities for patients and families affected by Autism.

Copyright © 2018 Organization for Rare Diseases India in USA (ORDIUSA), All rights reserved.
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Upcoming Events
From 29-February-2020
to 21-June-2020

RaceFor7USA 2020

1) Washington DC
2) SF Bay area, CA
3) Greenville, SC
4) Boston (Acton), MA
5) Frisco, TX

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