CDH International is the official Fiscal Sponsor for the Worldwide Rare Advocacy Partnership work at BioTechX 2022. Join us as we support the patient voice at Europe’s largest BioTech event!
Data. AI. Precision. Innovation.
For Pharma, Healthcare & Partners8-10 November 2022 | Basel Congress Center, Switzerland
This is a 4 in 1 world-class conference covers BioData World, Genomics Live, Cheminformatics Live & PharmAI. We’re excited to announce there are 300+ world-class speakers now confirmed including Bayer, Novartis, Novo Nordisk, Sano Genetics, AstraZeneca and more.
Current Speakers for this section are:
- Dr Wendy Chung – Columbia University CARES for Kids, DHREAMS, KidsFirst Database
- Dr Dick Tibboel – Erasmus MC, ICU
- Dr. Augusto Zani – Zani Lab, University of Toronto
- Dawn Ireland – Founder of CDH International, Patient Registry creator, global Patient Advocate working in 84 countries
- Luke Rosen – Founder of KIF1A.ORG, a nonprofit organization working to rapidly discover treatment for KIF1A Associated Neurological Disorder. Senior Vice President, Accelerated Development & Community Engagement at Ovid Therapeutics.
- Caryl Harris – Co-Founder & Executive Director, Avery’s Hope, Patient Ambassador for Illumina, Former member of Rare Advocacy Movement
- Terri Ellsworth – Professional Rare Disease KOL, Patient Advocate Thought Leader, Consultant, Public Speaker
- Sean Gordon – “After being diagnosed with an adult onset rare disease, I have founded www.rarefundingteam.com bringing together communications professionals and rare disease organizations on a pro bono basis. I bring over two decades of experience in sales & marketing of technology products.”
- Dr Neena Nizer – Executive Director of The Jansen’s Foundation. Patient and mother to two superheroes with Jansen’s Metaphyseal Chondrodysplasia. Working on a cure for JMC.
- Taylor Kane – Community Engagement Manager at AllStripes, Founder and Executive Director at Remember The Girls, Rare disease speaker, advocate, consultant, and author
- David Rose – Business Development at Rare Revolution Magazine. Ultra-Rare Disease Patient Speaker. Trustee for Mitrofanoff Support.
- Meghan Rauen LCMHCA/NCC – Founder and President, Global Gastroschisis Foundation. ” I have extensive education and research in medical communications, counseling, trauma, religion and medicine, patient communications, and bioethics/medical ethics.”
- Eden Lord – Founder & CEO at The Dash Alliance, Creator of the first virtual rare disease events, “The Rare Fair”, “24 Hours of Rare” & “Rare 72”, a collaborative model for rare disease solutions. Rare Disease Mom & Patient
- Jeff Lord – Chief Technology Officer (CTO) My City Med, rare disease dad
- Monica Weldon – Son 1 of 6 diagnosed globally in 2012 with SYNGAP1, rare disease advocate, Founder, Biotech Investor @syngap1_Fnd VAMO contributor @pharmaboardroom
- Onno Faber – TedEx speaker, scientist, CEO Rarebase, Founder of AllStripes, entrepreneur, keynote speaker, author, patient advocate, angel investor
- Jason Miller – Patient Registry Administrator, CDH International
- Carolyn Dumond – Associate Director, Global Patient Advocacy at Illumina
- Carie Chester – Lead Manager, Exam Operations & ServicesLead Manager, Exam Operations & Services AICPA
- Thomas Hach, Executive Director, Patient Engagement Cardiovascular, Renal & Metabolism, Novartis
- Bradlay Pryde, COO, One Three Biotech
To support the voice of patients at events, Terrapinn has generously agreed to give Rare Disease Patient Advocates a space at the event to engage industry leaders and open dialog between all players.
Patient Advocates will be coming to the event from around the world, and unlike members of Industry, most do not have a travel budget. This gives Industry the unique opportunity to direct support the Patient Voice by sponsoring the Patient Advocacy section of BioTechX.
|Silver||$5000||Name on signage at the eventListed as sponsor on 1 presentation’Panel Seat|
|Gold||$10,000||Logo on signage at the eventListed as sponsor on 2 presentationsPanel Seat10 minute presentation (pertaining to Patient Advocacy)|
|Platinum||$25,000||Large logo on signage at the eventListed as sponsor on 5 presentations2 Panel SeatsVendor Table25 minute presentation (pertaining to Patient Advocacy)|
|Diamond||$50,000||Extra Large logo on signage at the eventListed as sponsor on 10 presentationsListed as room sponsor at event4 Panel SeatsVendor Table50-minute presentation (pertaining to Patient Advocacy)|
After purchase, you will be contacted for details, company logo, statement, etc.
If you have any questions or would like to sponsor through CDH International’s NGOs in Switzerland, the United Kingdom, the Netherlands, Singapore or Hong Kong, please email organizer, Dawn Ireland at email@example.com
FOR IMMEDIATE RELEASE:
BioTechX 2022 Congress Implements New Patient Advocacy Initiative
London, United Kingdom / Basel, Switzerland – Tuesday, March 22, 2022 – Patient advocates and rare disease nonprofits are overjoyed that the medical conference organizer, Terrapinn, has created a new platform to include patient voices.
“This November, BioTechX returns to Basel along with three co-located events. We are so excited to announce that this year BioTechX will take place alongside Genomics Live, PharmAI, and Cheminformatics Live. This is Europe’s largest conference covering big data in pharmaceutical development and healthcare and will bring together thousands of industry leaders” announces Terrapinn on the company’s call for speakers.
Dawn Ireland attended her first Terrapinn event at the World Orphan Drug Congress in 2017 in Washington DC. “I was so impressed that this company was so inclusive of patients and patient advocates. Most industry events forget that patients are the consumers and should be the focus of all events. Right away, I knew that I would be attending a lot of Terrapinn organized events” said Ireland, who is a patient advocate and president of CDH International, a global charity for Congenital Diaphragmatic Hernia patient support and research.
Ireland began speaking, chairing, and representing patients at Terrapinn’s BioData conference in Basel, Switzerland and World Evidence, Pricing and Access (EPA) Congress in Amsterdam. In March of 2021, she secured a block of time for patient advocates at the EPA’s virtual event by tapping into her network of other advocates and her relationship with the Terrapinn team.
In November of 2021, the BioData Congress was back to an in-person event and had a great attendance but there was a lack of patient advocates. She went to Chris Shanks, head of the EPA event and admin of the BioData, and asked for another block for patient advocates. Shanks agreed and gave Ireland 3 hours.
Ireland took the project to the Worldwide Rare Advocacy Partnership (WRAP), a new collaboration she co-founded with 4 fellow patient advocates. By the time the next meeting with Terrapinn was held, there were 15 well-known, well-respected patient advocates who were signed up to roll up their sleeves and bring Patient Advocacy to Terrapinn events in Europe.
“Sharing the rare patient voice at an international medical conference is so important to our patient groups. Patients and patient families want to be so much more than a number on a laboratory slide or a name on a registry. They want to be a real live human representation, not just their disease,” says Caryl Harris, co-founding partner at WRAP and Executive Director of Avery’s Hope, a patient assistance organization for the rare pediatric GI patient community.
Shanks responded by giving Ireland the WRAP team 3 days instead of 3 hours, and Terrapinn became the first company to officially incorporate an equal presence of Patient Advocacy at a medical industry event.
“Usually, medical conferences will give advocates and charities a discounted vendor booth, a few opportunities to speak at round tables or panels but Terrapinn has always shown Patient Advocacy as much respect as they show big Pharma and other Industry players. They treat us as equals and that’s how every medical conference should be. We are so grateful to them for leading the way in this important cause” says Ireland.
“Being able to share the human side to medical data gives researchers and medical teams an opportunity to see disorders and disease from a fully human perspective,” says Harris.
“I’m thrilled to finally see a conference organizer include the patient advocate voice on such a large scale. It’s long overdue and perhaps the most important voice to hear. Thank you, Terrapin” says Terri Ellsworth, KOL Rare Disease Patient Advocate and the 3rd of 5 WRAP Co-Founding Partners.
In April, it was announced that BioData is now BioTechX and is 4 global events into one.
Ireland and her partners at WRAP are looking for more Patient Advocacy leaders to speak at BioTechX as well as corporate sponsors to cover their costs to attend the event. You can reach out to her at firstname.lastname@example.org to participate.
BioTechX will take place on November 8-10th at the Basel Conference Center in Switzerland.
Learn more about the event at: https://www.terrapinn.com/conference/biodata/index.stm
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This event is fiscally sponsored by:
A global initiative to stop Congenital Diaphragmatic Hernia
CDH International United States Registered 501(c)III #56-1916661CDH International Canada Registered c/o Chapel & York Foundation No. # 741095715 RR0001CDH International United Kingdom Registered UK Charity no. 1189819
CDH International SwitzerlandRegistered by the Articles 60 et seq. of the Swiss Civil Code.
CDH International Hong Kong c/o Hong Kong Foundation for Charities Limited Registration Number 65159428-000
CDH International Netherlands c/o Stichting Chapel & York Foundation Netherlands | RSIN/Tax number: 858450215CDH International Singaporec/o Singapore Foundation for Charities Ltd | Registration Number 65159428-000