Don’t Miss this Q&A about the Upcoming NORD Patient and Family Forum

Q&A with NORD Director of Membership, Debbie Drell, on the Living Rare, Living Stronger Patient and Family Forum, June 21-23 in Houston, Texas

  1. Which health care professionals would most benefit from this conference – child life specialists, medical social workers, genetic counselors, nurses, pediatricians, pharmacists?

Although some of the sessions at the Living Rare, Living Stronger NORD Patient and Family Forum will be geared towards physicians and genetics counselors, most of the programming is designed for all medical professionals that have patients with rare diseases. Even the sessions devoted for patients and caregivers will be educational for medical professionals to attend as they will provide a deeper understanding of the challenges that many people with rare diseases face getting a diagnosis and accessing treatments, services and good healthcare.

  1. Many patients have difficulty finding clinical trials and then deciding whether or not these are their best option. How will these topics be addressed

We have a workshop for newly diagnosed patients and anyone interested on this precise topic: “Clinical Trials and Investigational Therapies: Navigating your Options.” We’ll have two leading medical experts, including one from the National Institutes of Health (NIH) speaking on the subject, and they will be joined by Luke Prettol, a man who, since being diagnosed with Friederich’s Ataxia, has participated in three clinical trials and is about to start a fourth. All of the trials required him to travel and balance it against everyday life with work and family (he has three little kids!).

  1. Rare diseases affect everyone in a family.   Would it be appropriate for Grandparents to attend this program as they often are the “main back-up” support  ?

This is a great question. Grandparents are very much a welcome part of this program. Having a “backup” is such a huge relief when the primary caregiver is overwhelmed or becomes sick or unable to provide care themselves. Sometimes family members who are not directly involved have a hard time understanding the burden of caregiving on a daily basis, and if rare disease is in their family, they should come and learn about what their loved ones go through. They can also learn stress-reducing tips for themselves in the caregiver tracks and in the wellness room!

Additionally, I personally know of many grandparents who are not a “main back-up”  but the prime caregiver for a loved one living with a rare condition. These grandparents will gain a lot from the opportunities to learn, share, connect and recharge!

  1. Many rare disease families face challenges in decision making, especially towards the end of life.  Will quality of life issues be discussed?

The goal of this entire forum is to improve quality of life through education, connection, inspiration and fun – literally, fun! We want to show people living with rare diseases and their family members that they can live big lives and do things they may not have known were possible. We’ll have an evening of music and dancing to kick off the weekend, and on Saturday night, we’ll take over Space Center Houston to enjoy the museum and celebrate life at our Rare Impact Awards.

Quality of life includes everything from physical health, family, education, employment, wealth, safety, etc. These workshops bring in speakers on topics that cut across health (genetic testing, diagnostics) that help individuals live longer, get diagnosed earlier and accurately, and help an entire family learn about diseases that may be an important part of their family medical history and future.

When it comes to quality of life and family, we have an entire workshop track dedicated to caregiving, and one specifically on the impact of rare disease on the entire family: mom, dad, brothers, sisters, grandparents, etc. If the family does not have coping mechanisms and awareness of their new role, it will add an additional burden on the family as well as on their loved one diagnosed with a rare disease.

What happens when you have to quit your job or scale back because your rare disease makes it physically impossible to work? We have Andrew Hardwick, Metropolitan Public Affairs Specialist at Social Security Administration speaking about workplace issues like short-term disability and FMLA. The panel also will feature a discussion of copays and medical assistance programs for those who are struggling to pay for their life-saving drugs.

End of life issues tend to be “the elephant in the room,” the topic people are too afraid to discuss. We will be addressing this topic directly in our Long-term Survivor Panel: Tips, Tricks and Life Hacks for Living Your Best, Rare Life! For the first time, many families are learning about power of attorney and other end of life issues. Lisa Massey, diagnosed with primary immune deficiency some 16 years ago, will discuss with the entire panel this issue as well as “life hacks” for living your best life with rare diseases.

  1. Finding funding for wheelchair vans, certain scooters, bathroom modifications, ramps etc., is really hard. Can the financial resources, grants and support programs be discussed?  In addition, – what about insurance gaps?

Another great question! It dovetails nicely into the previous question on quality of life: the workshop I just mentioned about workplace issues also includes the opportunity to ask questions about government services, insurance gaps and financial support services for these important medical devices and resources.

  1. Many rare disease kids are now living to adulthood, but now have difficulty finding physicians who are knowledgeable about their disease. Can NORD’s Family Forum provide guidance?

We have a panel discussing the challenges of rare disease kids when they grow into adulthood: how does the care change? What happens when you transition out of pediatric to adult care? How do you find the right physician?

I’m excited to say that one of our speakers on this topic is a leader in the field of this topic: Chair of Baylor College of Medicine Transition Medicine Conferences, Al Hergenroeder M.D. He is Founder and Program Director for the Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-Base Care, which hosted its 17th annual meeting in 2016. Dr. Hergenroeder has led the Health Care Transition planning efforts at Texas Children’s Hospital (TCH) since 2004.

The panel also features a mother daughter combo: Betsy Sullivan, a 19 year old who lives in San Antonio and transitioned from pediatric to adult care about a year ago, will speak with her mom, Mary, about their experience together.

  1. For children and adults who do not have an exact diagnosis, how and why should they seek clarification? Some families are told you have a seizure disorder with developmental delay, but genetic testing won’t change anything, so why go through it. Will the sessions on genetic testing answer this question ?

This is an important question and one that can be asked during the genetic testing workshop if it isn’t directly addressed by a speaker. The purpose of this workshop is to understand the basics of genetic testing, and I think this is a great opportunity to speak directly to a leading expert in this field.

  1. It is so wonderful that the meals are included for our family. Besides travel and hotel, are there other expenses we should budget for?

Cowboy boots! But seriously, we are providing Friday night dinner, Saturday breakfast/lunch/dinner and Sunday brunch. All children are invited to attend, but the conference sessions are intended for adults. In an effort to avoid disrupting others attending the sessions, childcare services for children under 12 will be provided by licensed providers who will provide age-appropriate activities to keep the children safe and engaged all day. Children with special needs are encouraged to utilize the child care center and the child care director will contact parents prior to the conference to understand each child’s needs. Child care services are provided for Saturday workshops, 8am–3pm. Any families needing care outside of these hours will need to budget for this expense.

  1. Will there be any opportunities for us to speak one on one with the speakers ?

Absolutely! The speakers are available before and after each session to discuss their experience, strength and hope with living with a rare disease.

  1. Is there a system in place to reach parents if there are any problems in the childcare room?

Yes, when parents bring their children to the child care center for registration, they will discuss with the providers how they want to be contacted throughout the day and if they want to receive photos (via text message) of the fun things that their kids are doing!

  1. Other than the awards ceremony, what is the dress code?

Attire for the Friday BBQ, Saturday Forum and Sunday Brunch is casual. The meeting rooms can be cool, so please bring a sweater. The attire for the Rare Impact Awards is black tie suggested.

  1. How can I register for the Living Rare, Living Stronger event in Houston?

Visit the Living Rare, Living Stronger page to download the full agenda, information on pricing and to register. We are really looking forward to this special weekend!


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