Post by
sroberts in
on
December 8, 2023
| Speaker Information |
| First Name |
|
Irfan |
| Last Name |
|
Patel |
| Email |
|
[email protected] |
| Phone |
|
(302) 690-2706 |
| Organization |
|
NORD |
| Job Title |
|
Delaware RAN Ambassador |
| Credentials |
|
Caregiver |
| As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity: |
|
Asian or Asian American |
| What rare disease(s) do you represent? |
|
Methylmalonic Acidemia |
| How many years have you been involved with rare diseases? |
|
10+ years |
| Biography |
|
Irfan and his wife Farheen have four children, two of whom have a rare metabolic condition called methylmalonic acidemia (MMA). Their genetic disorder led to complications necessitating multiple organ transplants for both affected children. Irfan himself received a diagnosis of another rare condition, combined malonic and methylmalonic acidemia (CMAMMA), a few years ago. He passionately supports, advocates for, and actively participates in initiatives for the rare disease community. His dedication involves tirelessly raising awareness about the challenges faced by individuals with rare diseases. Irfan has successfully collaborated with state legislators and the Governor’s office to establish Rare Disease day resolutions and proclamations. His relentless efforts were instrumental in including organic acidemia in the Delaware Newborn Screening program. Additionally, he holds the role of Ambassador for the Delaware Rare Action Network.Irfan and his son Yusuf (MMA Mut0) were honored by the Governor’s office for their impactful advocacy work. They were recognized as recipients of the Governor’s Outstanding Volunteer awards for Advocacy.
In his professional capacity, Irfan works at TE Connectivity as a senior strategy and portfolio leader. He also dedicates his time to serving on the boards of several non-profit organizations, driven by a strong belief in contributing to society’s welfare. |
| Travel Distance from Los Angeles, CA: |
|
2400 miles |
| Presentation Information |
| Proposed Presentation Title |
|
Caregiving challenges in immigrant communities |
| Presentation Summary |
|
The purpose of this session is to highlight the challenges faced by caregivers especially immigrants who lack a broader support base. |
| Have you spoken previously for NORD? |
|
|
| If Yes, at which event (Name and Date) |
|
National Caregiving month panel discussion (11/30/23) |
| Have you previously spoken at any rare disease events or are you planning to speak at any upcoming events within the next year? |
|
|
| If yes, please list the name and dates of your speaking engagements . |
|
Spoke multiple times, since 2015, on the Rare disease day proclamation events at the State House. Hosted virtual rare disease day events in 2021 and 2022. |
| Please provide up to 3 examples of previous presentation experience, include links to videos if applicable. |
|
1 Rare disease commemoration at local community non-profit events targeted towards the challenges faced by first generation immigrants2. Presented at local schools in creating awareness on rare diseases and the impact on the student population.
3. Have been regularly interviewed by multiple local TV stations and local newspapers on rare disease community |
| Target Audience: |
|
Caregivers (preferably with first generation immigrant background)Social workers
Doctors and Nurses
Non profits who work on healthcare access framework |
| Learning Outcomes: |
|
1. Understanding of challenges that are unique to the migrant demographics2. It will help the health care centers to cater their care plan (especially aftercare services)
3. It will also help social workers to work on resources to support this demographic |
| Consent |
|
 As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree:
– To participate in a panel prep meeting with all speakers in the session between 3 and 4 weeks prior to the conference. (60-minute time blocks will be arranged via calendar invite).
– To use the NORD branded slide deck for any presentation decks that need to be created.
– To register in advance for the conference no later than April 30th. (A complimentary registration code will be provided).
– To respond within 72 business hours to all emails.
– To notify NORD as soon as possible if my participation in the conference becomes no longer possible so that an appropriate replacement can be identified.
|
|
