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Sun, Nov 06 - Tue, Nov 08 2022

1st Annual Patient and Family PK Deficiency Conference,

Orlando, Florida, United States Orlando, Florida, United States
4 Sponsors Confirmed
Rocket Pharma
Pyruvate Kinase Deficiency Foundation
Thalassaemia International Federation
Agios

  • About the event

    The conference will celebrate 60 years of sucess both of scientific advances and the tenacity of people of living with this Pyruvate Kinase deficiency.

    Pyruvate kinase (PK) deficiency is an ultra rare inherited (autosomal recessive) red blood cell (RBC) enzyme disorder that causes chronic hemolysis. It is the second most common RBC enzyme defect but is the commonest cause of chronic hemolytic anemia from an RBC enzyme deficiency.

    The conference will bring together people and families from around the world who are dealing with this disease. We will also welcome the researchers and scientists who are responsible for the many breakthroughs in treatment that have been happening in the last couple of years. 

    Amongst the scientists will be medical specialists and pharmaceutical companies.

    The conference will be held to a worldwide audience, both in person and online.

    Why should you sponsor?

    This year is a key year for the PK Deficiency (PKD) community marking it as the 60th year it's been recognized as a genetic disease. Similar in many ways to Sickle Cell Disease and Thalassemia in how it presents, PKD is a rare disease with a much younger history of treatment guidelines and little research dedicated to the cause. But that has changed and we are celebrating.

    In the late 80's and early 90's, researchers began to identify mutations in the PKLR gene in patients with PKD.  Pyruvate kinase is an essential enzyme in glucose metabolism and red blood cell metabolism, and is reduced to 5-25% in the red blood cell's of people with PKD. Interest in pyruvate kinase as a way to treat other diseases with similar metabolic pathways has driven researchers to study PKD more closely in the 21st century.

    In 2022, the first pharmaceutical drug to treat adults with PKD was approved by the US FDA. This drug is now being tested with other rare diseases. Two patients with PKD successfully underwent gene therapy in 2021 and more patients will continue to be entered in trials. 

    2022 marks a year of celebration for people with PKD who were told there would be no research, treatment guidelines or drugs to help them. This year people from around the world will gather in person and online to learn what options are available to help them live healthier, more abundant lives. People attending conferences such as these are often leaders in their communities and advocates for products, blood donations, medications, dietary advice, and anything health related. They are health influencers because they live with chronic disease daily.

    With your sponsorship you will reach an international audience both in person (~100 people in person) and through a virtual format including people and families with PK deficiency, pharmaceutical companies, hematologists and nonprofits working in areas of chronic non-iron deficiency, rare anemias including Sickle Cell Disease and Thalassemia. You'll be able to further your company's visibility and reach through our social media, conference materials, and exhibit. 

    All sponsors will receive a donation receipt and excellent service.

     


    Tamara Schryver

    We are a nonprofit organization based in the US called Thrive with Pyruvate Kinase Deficiency. We work together with people both in the US as in the EU and the UK to ensure we can provide the best support for people with PK Deficiency.

    Our Board and Volunteers are all either patients with Pyruvate Kinase Deficiency or caretakers of a child with this disease.

    Our mission is to connect the Pyruvate Kinase Deficiency community through treatment support, increased social awareness, and advocacy.

    Thrive with Pyruvate Kinase Deficiency Organization was founded on principles of resourcefulness, transparency, and connectedness. 

     

    Contact the Organizer Contact the Organizer

  • 51-100 attendees expected


    50% Male Attendees


    50% Female Attendees

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Select a Package

5 available packages from US$100 to US$30000

US$10000
Universal Studios Ticket Sponsorship

Tickets for 83 people (children and adults) with Pyruvate Kinase Deficiency disease to attend Universal Studios, 1 day, Park-to-Park Pass. This is a once in a lifetime opportunity for many people with this rare disease. * Prime booth or tabletop choice (vendor selected) * Logo recognition on promotional materials (web, printed, emails) * Optional promotional item in bag drop * Profile of the organization on Thrive website & nonprofit FB page * 1/2 page ad placement in ad conference brochure * Event & sponsor marketing on social media accounts * Opportunity to provide promotional items in bag drop to guest rooms * Post conference report

1 available

US$100
Donation

* Donor recognition on web and conference brochure. * Opportunity to provide promotional items in bag drop to guest rooms.

10 available

US$30000
Gold Package

Prime booth or tabletop choice (vendor selected) ● Logo recognition on promotional materials (web, printed, emails) ● Profile of the organization on Thrive website & FB nonprofit page ● Pre-conference registration mailing list two weeks prior ● Premium, full page ad placement in conference brochure ● Event & sponsor marketing on social media accounts ● Opportunity to provide promotional items in bag drop ● Second choice to sponsor one of the following: ● Thrive with PKD/TIF Welcome Reception & Meal ● Lunch eon Buffet ● 60th Anniversary Celebration Family Social ● Post conference attendee surveys ● Post conference report/access to video content

2 available

US$15000
Silver Package

● Prime booth or tabletop choice (vendor selected) ● Logo recognition on promotional materials (web, printed, emails) ● Profile of the organization on Thrive website & nonprofit FB page ● Pre-conference registration mailing list two weeks prior ● 1/2-page ad placement in conference brochure ● Event & sponsor marketing on social media accounts ● Opportunity to provide promotional items in bag drop to guest rooms ● Post conference attendee surveys ● Post conference report/access to video content ● Choice to sponsor one (1) of the following: ● Continental breakfast ● Mid-morning break

2 available

US$500
Friends - Small Business

● Tabletop – 6/8’ ● Logo recognition on promotional materials (web, printed, emails) ● Opportunity to provide promotional items in bag drop to guest rooms

10 available

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