📅 Register for 2018 RARE Patient Advocacy Summit

The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.

Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:

  • Living with a life-altering condition, before and after diagnosis
  • Becoming successful architects of your health and that of your disease community
  • Building on advances as a patient, partner, and driver in drug development
  • Learning about the latest science and technology that drive innovation

The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!

Click here to register now:


Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.

Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.

We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.


Webinar: Make Sense of Your Dollars

Tuesday, June 13, 2017 at 10:00am PST.

A rare disease diagnosis is something that no one can plan or prepare for and it can often lead to financial burdens, but with the right guidance in financial planning, you can overcome these budgeting obstacles. Listen in to hear professionals in finance guide you through money management and budget preparation.

If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.

Don’t forget, to access this webinar use the password: “Rare” with a capital “R”.

 Lori Leathers, Advisor, 1847 Financial

As an advisor with 1847Financial, Lori supports the goals of individuals and families through life insurance, fixed annuities, disability, and long-­‐term care insurance. Before working in this industry, Lori as a pharmaceutical sales representative for Merck&Co., but experienced a life-­‐changing event when she became the mother of a son diagnosed with Fragile X Syndrome. Lori made a significant career change to help other families navigate through the special needs planning process, and to help them secure the future they envisioned for themselves and their loved ones. Her mission is to help as many families as possible achieve their goals by ensuring all financial, legal, and government benefit resources effectively combine to work to their advantage.

Lori is involved in many efforts within the special needs community, including advocacy, participation in clinical research, co-­‐leader and member of parent support groups, and a parent mentor of Parent to Parent USA. Lori is also a member of Children and Adults with Attention Deficit Disorder (CHADD), and Parent and Founder of the Special Needs Resource Network.

Lori received her Bachelor’s Degree in Biology from Bucknell University and her Master of Science degree in Ecology from Pennsylvania State University. She also obtained a Master of Science degree in Regulatory Affairs and Quality Assurance from Temple University in Philadelphia, PA.


 Pat Bergmaier, CFP, ChSNC, Chartered Special Needs Consultant, 1847 Financial

Pat is a Certified Financial Planner (CFP) and has a passion for working with families. His knowledge and expertise allows him to develop comprehensive and holistic financial plans for his clients that provide the framework for making financial decisions that will help achieve their lifetime and legacy planning goals.

Pat is also a Chartered Special Needs Consultant (ChSNC).This designation has provided Pat with the knowledge to address the unique circumstances and requirements of planning for individuals with special needs a core focus of his practice. Pat received his Bachelor’s Degree in Finance from Albright College in Reading, PA and holds his FINRA Series 7, 66, 63 & 6 Securities Licenses. Pat began his career in the financial services industry in 2005 after a successful baseball career at Albright where he was awarded Conference Player of the Year during his senior season.

Prior to joining 1847Financial, Pat partnered with the MetLife Center for Special Needs Planning where his passion for working with the special needs community began. He is a board member of the Timothy School in Berwyn, PA which is devoted exclusively to teaching students with autism. He is involved with supporting many special needs organizations such as Ascend–the Asperger and Autism Alliance of Greater Philadelphia, Autism Cares Foundation, Down Syndrome Interest Groups, and PLAN of PA.


  Tony Ferrandino, Founder, Drew’s Hope & Senior Financial Advisor, Merill Lynch

Tony Ferrandino founded Drew’s Hope in 2007 with his wife, Katie, when their son Drew was diagnosed with Batten disease. Drew’s Hope is a non-profit foundation which is focused on raising funds for Batten disease research. As a parent of a child with a rare disease, Tony has used his personal experience to fuel his passion for advocacy. In September of 2014, Drew passed away from late infantile Batten disease. Tony serves on the Board of Directors for the Batten Disease Support and Research Association (BDSRA) and works closely with the Scientific Advisory Board to determine appropriate research funding. He received a Portrait of Courage Award in 2015 from the National Organization for Rare Disorders (NORD) for his continued efforts to raise funds for research. Tony is a Senior Financial Advisor at Merrill Lynch with over 25 years of experience in the financial services industry and he has focused on helping families with special needs children prepare financially for life’s transitions.

Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.